Diagnosed with breast cancer at 37, BRCA2+, double mastectomy, chemo, radiation, mom of two. I've been to hell and back and am an open book.
I am 44 years old, and I was diagnosed with breast cancer seven years ago. I have gone through chemotherapy, several surgeries, radiation treatment, and more (details about all that to come, below). Although I eventually found an oncologist and treatment center I love, I have been frustrated along the way by experiences I was not prepared for. I know doctors can't possibly tell you everything that you might experience, but some things I went through along this journey turned out to be common for many cancer patients, and it seemed to me that the doctors should have made this information available beforehand. I like to know what to expect—rather than hearing "Oh, that's normal," after I'm already experiencing it!
There are always going to be things that the doctors don't tell you about, so if you're going through breast cancer treatment now or will be in the near future, I hope you learn something here. You need to stay on top of things and make sure you have all of the information you need. No one cares more about your treatment than you. You are your own best advocate.
I am no expert, nor am I a doctor. I'm just a cancer patient, wanting to help others who are in my shoes.
My Cancer Facts
I was diagnosed with Invasive Ductal Carcinoma in June 2008. I had a Lumpectomy with Sentinal Node dissection in July 2008. Positive Sentinal node (only). My genetics test was positive for BRCA2. Chemo: AC dose dense, every two weeks for 4 times—this turned out to be too difficult to finish. I refused the last session and ultimately changed doctors and treatment center, which was best thing I could have done. I started Taxol weekly for 12 weeks, which felt like a piece of cake compared to AC!
1. What No One Told Me: Weight Gain
I had always thought and assumed chemo made people lose weight, and I asked my doctor about this. I was told that although it's true for most cancers, it's not true for breast cancer. Great! Wham—now I'm 30 pounds heavier, none of my clothes fit anymore. and I feel a huge sense of disgust for myself and my appearance.
Apparently the weight gain is due to:
- Steroids that they pump into you with the chemo.
- Chemo makes your body basically go into menopause, or "chemopause," as some call it. This involves a slow-down of metabolism, etc., and thus, weight gain.
Now I have body image issues on top of everything else! Okay, by the time the chemo was completed, my hair had just begun growing back (yay!), and I found the guts to actually go out in public without my headcover. In February I underwent a bilateral mastectomy (all due to the BRCA2) and tram flap reconstruction. I was in surgery for 11 hours and in the hospital for 1 week.
2. What No One Told Me: Breast Reconstruction
After the initial few weeks of recuperation, I thought I'd look close to normal. I thought I'd have the surgery, heal for a few weeks, and then have a flatter belly and nice, new, perky boobs. Wrong! I had (still have) new pouches of fat on my hips where the hip-to-hip incision was placed. I was told that's due to the skin being pulled down and reattached together. "Don't worry," my plastic surgeon says all the time, "I'll fix anything that's not perfect". Also, the boobs are not so perky, and they kind of wrap around to my side a little—ew! Again, he says he'll fix anything that's not perfect. Okay, I'll hold him to that, but why the hell didn't he, or his staff, tell me what to expect? Sure, I could have asked more questions, but I had no idea what to ask!
April: There has been a contoversy between my oncologist and several different radiation oncologists as to whether or not I should have radiation therapy. The first radiation oncologist I went to said no, I did not need it since everything I've done so far was pretty aggressive already, and it was only one positive lymph node. The radiation oncologist I went to for a second opinion said, better safe than sorry, let's just do it. My oncologist agreed that I should do everything I could to improve my chances of survival. Reluctantly, I agreed to do it only because I couldn't think of a good reason not to. I had 28 sessions, 5 days a week. It was easy, but a pain in the ass. Toward the end I was quite sore and raw in a few places in the armpit area.
3. What No One Told Me: Shingles
Many cancer patients, due to a weakened immune system, develop Shingles! Had I been told this, I would have sought medical attention right away when the sore spots in my armpit began to welt. I thought it was just my wounds healing, and so did my oncologist. It got worse. I began getting what seemed to be bites down my arm to my elbow—they itched like MAD! One night I got on the computer around 3 a.m. and went back to bed around 5 a.m., convinced that I either had bed bugs or scabies.
A week and a half later I saw my radiation oncologist for a follow-up visit. She took one look and immediately told me I had Shingles. I was relieved it wasn't scabies! I had no pain, just itching, so I thought it wasn't too bad. She started me on medicine and I started researching; I learned that Shingles is best treated when you start the medicine within 72 hours of the rash showing up—DAMN! See? Had someone told me ahead of time about the possibility of getting Shingles I'm convinced I would have sought treatment for the symptoms right away. Now I've had them for 6 weeks, and it has been a horrible, horrible experience. They itch enough to drive you mad, really, truly, insane mad! That's not even the worst of it—I woke up two Fridays ago in serious pain all over with swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection.
I truly believe that the radiation therapy was "the straw that broke the camel's back," and that had I not done the radiation, neither the shingles nor the staph infection would have occurred. I know I can't do anything about it now, but I'm really pissed that I decided to go through with the radiation even though I really didn't feel it was necessary. This is where I'm at right now.
I had to postpone my Oopherectomy, which was supposed to be two weeks ago, while I was in the hospital with the Staph infection. I really want to get it over with, but I will not do any more to stress my body until I'm completely health again. Hopefully that will be very soon.
A Look Into My Head at the Beginning
I wrote this on September 30, 2008:
I would like to know if I'm alone. I'm 37 and am currently going through chemotherapy for breast cancer that was diagnosed June 25, 2008. I lived in San Diego for 11 years, and my husband and I tried for several years to get transfers to Florida so that I could be near my family again. I stopped working after I had my first baby in April 2005. Actually, I went back to work when she was 5.5 months old, but she wasn't adjusting to daycare well (refusing to take a bottle or sleep ALL DAY), so I asked my employer for a few more months of unpaid leave of absence, but they said no. So, I had to quit because, obviously, my baby came first. Five months later I got pregnant again and had my second little girl in November 2006. By the way, I breast-fed both my girls until they were 14 months old because I knew how good it was for their health and because I knew it had health benefits for me, as well, like a reduced cancer risk. Okay, fast forward to May 2008, my husband's transfer request was finally approved, and we're actually going to move to Florida!
A couple of weeks later I feel a lump in my left breast while rinsing off in the shower. I scare right away because it feels unlike any other lump I've felt there before. I go to the doctor and am told it's not a tumor because it moves too much, probably just a cyst, but let's get you scheduled for a mammogram anyway. Three weeks later I go for the mammogram and am told it's definitely not a cyst, but it could be a fibroadinoma - a benign tumor - which is actually common, especially in someone my age, but let's do an ultrasound and biopsy to be sure. I went home feeling very relieved and sure it was no big deal. My mother was diagnosed with breast cancer when she was 52 and survived and has been cancer free for 6 years now, but I never thought much of my increased risk because I was told that since she was older than 50, it was most likely age related, and she was the first in the family. A few days later, June 25th, I received the call - you have breast cancer.
I was in the middle of packing up my home to move to Florida in 6 weeks, I was taking care of 2 toddlers full-time, and struggling to figure out where we were going to live when we got to Florida - we actually made an offer on a "short sale" home that my parents found for us. I saw a surgeon right away and was given the choice of lumpectomy to remove the tumor or mastectomy. Because I was on a time crunch because I needed time to recover from surgery in order to finish packing my home I chose lumpectomy with sentinel node dissection.
Surgery was early July and all went well, but 4 days later I received a call from my surgeon that I had to go back in for more surgery because the margins were positive and they had to remove more tissue - oh, and also 1 of the 18 lymph nodes removed was positive for cancer cells. A few days later I had the second lumpectomy and that was all... somehow I got the rest of the house packed and we arrived in Florida mid-August. The short sale was still pending, but the owners had moved out and agreed to rent the house to us until closing. We moved in a week later when the movers arrived - the same day hurricane Fay was beating up south Florida - welcome to Florida!
In August I saw my new Oncologist for the first time and the following two weeks consisted of a breast MRI, some heart scan procedure, a surgical procedure to implant a port for chemo and a PET/CT full body scan. Oh, I forgot to mention that AFTER my two surgeries in San Diego, I received results from a blood test I was given prior to surgery that came back positive for me carrying the BRCA2 cancer gene. Wow. Now I had to deal with more stress - what to do now and the stress and guilt of the fact that I may have given this gene to my daughters and we won't know for years and years. My oncologist recommends bilateral mastectomy and oopherectomy (removal of ovaries & tubes), due to the positive BRCA2 gene, but chemo first. Chemo started September 10th. I was told I would feel fine initially and I may feel some effects after 48 hours. I had been warned I would feel really tired - I thought, and told people, I have two little kids - I know tired and I can deal with being tired, no problem. It hit me 3 hours after chemo - nausea and exhaustion. Exhaustion - lethargy - like I can't even explain nor have ever felt before. Misery. It lasted exactly 72 hours and then I felt normal again. Second chemo was two weeks after the first - 6 days ago. I still feel horrible. Before chemo I knew I had cancer but I knew I would survive, because I had to, and everyone admired my attitude about it. I didn't feel sick even though I knew I had "cancer". Now I feel sick. Chemo sucks. I don't feel normal and I hate the world and whoever thought that I needed more on my plate at this time in my life. I feel alone.
The day I felt the lump, I said to my husband, mostly jokingly because I had no clue what was to come, "this is happening now, in the middle of this move crap so that I can be near my family for help while I go through chemo". That sends chills up my spine now - amazing how your brain knows something's wrong before you actually do! I had no clue whatsoever that I was actually right... but not so much.
So my husband's commute isn't terrible we chose to live between his work and my family, so we're about 50 minutes from my family - not exactly a hop skip and jump away, making it not so easy to get help from my family. Since my positive gene test, my mom and sister have been tested and my sister, thank goodness, was negative, but my mother was positive. Now my mom is facing her own issues - she's having an oopherectomy today. She's facing bilateral mastectomy now, too, but she wants to do it before the end of the year for insurance reasons. My family is doing their very best to help. My husband thinks I'm just feeling sorry for myself and he wants me to be a fighter and thinks that by acting as if he doesn't care at all about what I'm going through I'll fight more. I didn't feel sorry for myself before, but now I do. I left my comfort zone of 11 years. I left good friends that I think would have been a huge help. I left my in-laws, who I realized too late were - are - wonderful and would have done anything they could to help me get through this I'm feeling a little regretful for leaving San Diego, but the fact that I got immediately thrown into cancer treatment upon arriving here doesn't help. I have no one to help me and I feel like I'm dying. I haven't even mentioned the financial ramifications this is having on my family - yet another stressor. I've completely lost faith. Not in my life because I still know I'll survive this, but faith that there's a good god or higher power out there.
I did nothing to deserve this. I want to know how Christina Applegate got away with not having to have chemo! I couldn't get this thought out of my head - I don't know why.
I tried to quit when I saw my doctor yesterday, but she won't let me. No one will. Only six more sessions, I keep reminding myself every two minutes or so. It's going to take a miracle to put a smile back on my face. I do believe everything happens for a reason, though sometimes the reason is unknown. I really need to know why the universe felt I need this test. Why now when I have so much on my plate already? I started writing this out of anger because no one wants to help people like me. The only people you read about in the media who are battling cancer are either famous or somehow they have a better story. They're not real people, like me. I'm lonely, sick, and miserable.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2009 Lily Rose
Lily Rose (author) from A Coast on September 14, 2017:
Nancy - thanks for your comment. Love to you as well and thank you for reassuring me that I am still not alone!
Nancy Hoffman on September 09, 2017:
I'm a 4 year survivor and your story hits so close to my heart! The weight gain, horrible breast reconstruction! If I only knew before.... I'm not sure what I'd of done differently, but it would have been so nice to be prepared!!
Love and light to you...you're not alone! Thank you for making me feel less alone!
Lily Rose (author) from A Coast on April 14, 2015:
Oh Cynthia, every word and feeling poured into writing about my experience is for comments such as yours. To be able to vent and help people at the same time is a great feeling and I am so very happy that you found my hub cathartic. Thank you so much for your comment and my thoughts are with your two friends. Come back anytime if you have questions that I may be able to answer. God bless.
Cynthia Zirkwitz from Vancouver Island, Canada on April 14, 2015:
Dear Lily Rose-- I just came by your hub tonight and found your expressive ability and willingness to talk about the details of your experience was cathartic for me.
Two of my friends, both "younger" women, are currently doing chemo, and lined up for radiation. One is a single mom with a teen son (today she went into the hospital maybe to amp up her immunity? because she was running a fever and has chemo again in 2 days) and the other is a wife and mom with a teen son as well. I'm somewhat shocked at how very rapidly they were rushed into chemo, and about the harshness that my one friend's questions around alternatives were met with-- she felt there was a definite threat of no help forthcoming if she didn't just roll over for the chemo.
They both have many capable and kind friends who would likely juice around the clock for them, etc., if either one of them made a decision for doing the alternative route, but,as you pointed out, there really wasn't much opportunity to even explore the possibilities.
Thank you for your hub that brings up many of the unexplained issues, and sparks some similar and other experiences explained in these comments. This all helps! God bless, Cynthia
Lily Rose (author) from A Coast on March 22, 2015:
Easy Exercise, thank you for your comment. I am so sorry for your loss.
Kelly A Burnett from United States on March 08, 2015:
I don't have many regrets in my life but when my husband was diagnosed with pancreatic cancer I wish I had said no to all the trauma of chemo. For pancreatic cancer the statistics are clear, the chance is essentially nil.
Thank you so much for baring your soul and contributing.
God loves you and you are in our prayers.
Lily Rose (author) from A Coast on November 04, 2014:
Thank you for your comment. There is definitely a part of me that believes in what you say, but to many (including me) it is so much easier said than done. Sometimes it's just so hard to turn off the negative, fearful thoughts. One day I hope to be better at it.
Rita from North Long Beach, California on November 03, 2014:
Per an earlier comment, positive thinking does work, laughter is a very healing modality. Epigenitics, the new field showing you can affect your diagnosis by your thoughts is recognized by the National Institute of Health. Meditation, visualizing the healing to be done, actually being done. The book, Biology Of Belief by Bruce Lipton, describes the process on a molecular level.
Lily Rose (author) from A Coast on October 31, 2014:
Thank you, fpherj48! I am definitely still here. Still enjoying the heck out of my kids and still struggling to get past all the side effects that I'm convinced will never go away.
I'll never be the person I was, phyisically and mentally, and I struggle to come to term with that every day still, but I am here and I survived and I realize what a blessing that is and i do not take it for granted.
Thank you for visiting and for your lovely comment.
Suzie from Carson City on October 30, 2014:
Lily Rose.....I clicked on to this hub of yours, from the wonderful hub I had just read by cam8610. He wrote of his journey with his wife through her breast cancer fight. It was beyond emotional.
After reading your story Lily, with my heart so heavy with all you were going through at the time....the very next thing I did immediately was click on to your profile page. There I was "delighted" to see what I so wanted to see! It told me that your last activity here on HP was 9 days ago! You ARE a survivor.....bless your heart and more power to you!
Your attitude seems to me, to have been amazing through the worst of it. I know you had reached a point of misery & loneliness, but quite honestly, I could feel your strength.
I truly admire you, your bravery and of course now, I celebrate your return to ongoing health.
Please know that you are wished a long life of happiness with your beautiful family. I applaud you. Lily and am pleased to meet a Hero.
Lily Rose (author) from A Coast on March 25, 2014:
Wow, Jane, thank you for your comment. I am sorry you are going through this. It is very hard to make the right decision and although I do have some regrets I do not regret hosing the route I did because what mattered to me was that I be here as long as I possibly can to see my daughters grow up. I could never have made the decision that you are making. I know someone who did and she passed away after about 8 months. Her family was furious at her for not doing what she could with medicine to stay in their lives. I have also heard of people miraculously becoming cancer free with positive thinking! Who knows. What I continue to go through sucks, but you know what? I'm alive. I'm in my daughters' lives. They love me and think I'm the most beautiful mom in the world. That is enough for me. I would do it again if I had to just to be with my girls. Period. Best wishes to you.
Jane on March 25, 2014:
Reading your message certainly made me feel bad for you. How hard to go through this with children. I am sorry people do not understand. I sort of doubt anyone not going through this terrible disease and evaluating treatmetn options can truly understand.
I, too, feel utterly alone in this. I was diagnosed with aggressive breast cancer 3 weeks ago and found the lime sized lump 6 or 7 weeks ago. I am seeing a 2nd surgeon today.
Reading your post made me feel my decisions to forgo all treatment was the right one. I do want very badly to get a lumpectomy but do not want my lymph nodes removed due to fear of lympedema and impairing my immune system which is crucial when one chooses to do alternative health modalities.
I am very worried no surgeon will do that or even do the sentinel node prior to the surgery for if it is positive and I do consent to remove the three lymph nodes, I will never allow them to remove the 20 lymph nodes they want. It may have even been why you got this singles due to the immune system being impaired but who is to say for sure.
I can identify with your feelings on God some..I had the worst six months of my life almost and just when trying to make good changes this hits me. I am not sure how God can love us yet put us through constant hell but really itis not always god CVancer comes form genetics and form lifestyle and other things like people hiding the dropping of cancer causing chemicals to make money and thigns not under God';s control as he does not suspend his natural laws like gravity so if x leads to cancer then it is due to that and if greedy people feed us dangerous food it is due to their free will so have to realize God cannot do everything nor is he really responsible for everything. I think osmetimes people see the evil in the world and think this is
God's will and doing but maybe it is not..as I said he cannot do evil He does not suspend his natural laws and the consequences of breaing them and he does not violate man;s free will whih leads to much misery and death
He does help us though I feel in some things working out even though not all. It is hard to say why some people do not have it tha badwhile others suffer time and time again. It seems unfair and when hubby says he wants you to fight..hey even soldiers get a break sometimes. People like me are also fighting but in a different way attempting to drastically change our lifestyle and do things to build auch a level of health that the body hopefully heals itself still it may not work and it is hard to feel I may have cauased my own death by researchng too much to the point I realized I could never do that as I know many of the side effects not commonly discuessed in these treatments.
I wonder if the radiation they gave me 19 years ago for another breast cacner (early) in the same breast did not caudee this cancer as they had to give me more than normal and said it bounces off the equipment and can cause cance rin the breasts and glands in neck.
ad I know then about alternative health like I do now I do not think I would have had radiation.
Unless we demand and go to safer treatments nothing will change as docs use fear to sell these toxic treatments. I am cared scared as heck but I finally decided after weighing all the options that chemo was too risky.
Drs get mad when you do not do what they say but I read a study showed 75% o doctors would not have chemo themselves and that is telling..they tried to minimize everything. They seemed shocked and angry on one case that I was thinking of foregoing their treatments.
It is hard to get support for tryng something different and my own osn said I was follish and they feel these decisions will kill me but I am the one who has to ive with the agony of treatment and worry of permanent harm from it. I feel bad I m not like the others and just do what the doctors say it could save my life but at what cost. I dont want to hurt my sons or make worng decisions. But I tend to use alternative health most of the time and believe in it a good deal and fear the doctors treamtnets are not safe and organic ot the body and might make me worst.
RThe hard thingis once the lump is removed I will have no way to see if it is staying the same, growing or shrinking. I feel I can neve rgo off this program as cancer could strike me now frm somewhere else at any moment.I wonder why did I get this bak..I never thought I would be dealing with this again, I am going for genetic testing and have several relative with cancer and got it before 50. But bnow that you mentoion it they said if positive they would remove other breast and overires etc and I am not going to do that
I am praying the days left to me are not too horible and I can smile again that alternative health works for me as it has for so many and if it dsoes not and cancer takes me it is not so terribly scary and painful.
My life now seems to be cancer 24 7 either trying to deal with all the decisions and emotions. researching, douing tons of alternative health which is not able to be completed even if I do it 24 hours so never get it done and worry not doing enough, seeing doctors, writing questions etc I m sick of this and want to have my old life back..it was crappy but not this crappy.
I am worried the alternative will not work but just can't so the chemo and had radation already so not a candiate for that or hormones. I am just praying the dr says he will remove the lump as I want and not the lymph node as I want..what does it matter if it is in the lymph nodes as that is just for staging and deciding what treatment to do and since I do not ewant any and am praying alternative medicne aggressively done will work, it does not matter if it is in lymph nodes as the body will either remove it or not.
I do not understand why my life is going to end so early and worried what will happen if it spreads --praying for a miracle. worried about regrets if it spreads. Have no idea ho aggressive aggressive is and how long I might expect to live and it all sucks and sucks bad.
cannot get a straight answer on anythign and thank god for some research that helped me ask questions as they told me essentially nothing and withheld info form me and now act like it is all their decsions what to do not mine.
They both said in 25 years noone did not do everything they said which I find hard to believe and the one who did not came back with it all over her body..hey thanks a lot a==h==e
If I make it 5 years which is the only thing they told me I would not make it 5 years and I think maybe somewhere between 6 monts and 2 or 3 yearsa to live according to them, I will be sure to go back and let them know I am still here so they can never again honestly tell someon who is like me and woried about the treat,ments being too dangerous (especially worried about brain shrikeage and cognitive decline etc that can be permanent as far as loss of high iq) that someone did not follow their advise and made it past her death prediction. I pray this happens as I do not want to leave my life, my osns and my one brather who cares.
I think you are through the worst of it so hang in there.
Lily Rose (author) from A Coast on March 03, 2014:
Thank you for your comment Nadia and my prayers go out to you and your brother. I am doing well. Cancer free but lots of continuing side effects still. I am alive and that's what matters.
Nadia on March 03, 2014:
I just came across this article and I hope you're doing fine.
My brother was diagnosed a year ago with stage 4 breast cancer. He is very hush hush about his treatment and prognosis, so all we can do is pray and be there physically whenever we can.
Lily Rose (author) from A Coast on January 13, 2014:
Thanks so much for your thoughtful comment, Ruby H Rose!
Maree Michael Martin from Northwest Washington on an Island on January 13, 2014:
Your truthfulness and honesty here really helps so much. Thank you for the awareness of what really goes on in so many lives. I continue to support the awareness in anyway I can.
Monica on June 27, 2013:
I feel all of your frustrations and anger with my husband!
Lily Rose (author) from A Coast on May 06, 2013:
Oh rosie, I'm so sorry to hear what you're going through - and about to go through. It's not easy and no one but you (and me!) will realize just how hard it is in every way possible. I found this quote a while back that I printed out and it hangs here by my computer: "You never know how strong you are until being strong is the only choice you have." That about sums it up and that is how you WILL get through this. And you will smile again. Because you have to. Feel free to come back here and chat or contact me through the link above. Best wishes for a speedy and uneventful treatment. God bless.
rosie on May 06, 2013:
this helps me tremendously im 37 invasive ductal caricinoma, 6 positive lymph nodes two young children 5 & 2 im supposed to start my first chemo tomorrow, I've lived in a new town and hour and a half away from all of our support and this morning my daughter woke up puking im afraid she has the stomach flu. i am afraid my son is next I can't hold her and lay with her because i"m afraid im going to get sick....Today has sucked and I feel tomorrow will be worse I hope that you are smiling again Im glad to read something soooo much like my situation thank you rosie
Lily Rose (author) from A Coast on May 01, 2013:
I haven't seen that book, so thanks for making me aware of it. Will have to check it out! Thanks for your comment!
mominTX on April 27, 2013:
Thank you for sharing your story. I went thru similar experience when I was diagnosed with breast cancer 4 years ago. Recently I came across this book, that I highly recommend to every woman. I wish I read before I had breast cancer. It's called "What your doctor may not tell you about breast cancer", by John Lee.
Lily Rose (author) from A Coast on April 17, 2013:
Thanks for your comment simallenjo. I'm working full time now so don't have a lot of time to write more, but I will always try!
Sim Allen from US on April 17, 2013:
You are correct healthylife2 same here, I also realized that there are so many things the doctors don't tell you that happen to many people going through the same treatment. I realize the focus is on the medical aspects but I think a pamphlet with a few practical tips would be helpful very helpful and so easy to implement. really your article is very helpful to readers. Keep writing information on such a topic, glad to read it.
Carolyn Casten on September 23, 2012:
I am going through the same thing only mine is her2 positive. I have six abraxane treatments left and a year of herceptin to look forward to. My surgury was the lump and 13 nodes, only the sentinal had any cancer. My pet scans are clean. I don't want to finsih my treatment. I am tired of being sick. Please help me understand why I should finish them.
Lily Rose (author) from A Coast on July 06, 2012:
I agree completely! There are so many things that happen to you in treatment that they don't tell you about, although it would be hard for them to list off all of the "possible" side effects, they should tell you like it is rather than be so matter of fact about it. I, too, hope that this article helps others, that's why I wrote it. Thanks for your comment. Best wishes.
healthylife2 on July 06, 2012:
When I went through treatment for ovarian cancer I realized that there are so many things the doctors don't tell you that happen to many people going through the same treatment. I realize the focus is on the medical aspects but I think a pamphlet with a few practical tips would be helpful very helpful and so easy to implement. I'm sure this article will help others. I'm glad you are doing well!
Lily Rose (author) from A Coast on May 04, 2012:
Thank you for your comment - WoW! Great inspirational story. I am now 3 years out and cancer free. I continue to suffer from side effects of the radiation, but I am alive and that's what counts. Best wishes to you.
Lily Rose (author) from A Coast on August 06, 2011:
I completely agree, Rita! Thanks for your comment.
Rita from North Long Beach, California on August 06, 2011:
I love your informational writing. As a nurse, I realize not all doctors are know-it-alls, and wish more of them would tell people as many of the pros and cons of all potential treatments
Lily Rose (author) from A Coast on April 15, 2011:
Thank you for your comment, Susan, and I'm happy to hear that you are also a survivor. All the best to you, too!
Susan Zutautas from Ontario, Canada on April 15, 2011:
I am a 20 year breast cancer survivor and after reading your hub I feel so bad that you have had to go through so much. I opted out of reconstruction and some days I regret it. Thanks so much for sharing your experience and I wish you all the best.
Lily Rose (author) from A Coast on March 24, 2011:
You are very welcome, marshacanada. Yes, it really is sad how everyone nowadays either has/had cancer or knows someone who does - that's just too much cancer!
marshacanada from Vancouver BC on March 23, 2011:
Thanks Lily Rose for this excellent hub with very good detail and lively supportive discussion.So many of my friends and relatives have had cancer.
Lily Rose (author) from A Coast on March 15, 2011:
Bethany - You're right! I think these days more than ever it seems that everyone knows someone with cancer - that's just too much! Thank you for your comment and for sharing my hub - that's why it's here!
Bethany Culpepper on March 15, 2011:
Lily Rose, Wow. Thank you for sharing your experience with such honesty. It seems every week I hear from friends who are fighting breast cancer. I will be sharing your hub for sure.
Lily Rose (author) from A Coast on February 13, 2011:
Hey Cindyvine. You're just a couple of days out - how are YOU?! I'm doing great, thanks for asking. I still have regrets about having done the tram flap because I don't really like the reconstruction results and wish I had implants to look more normal, but at the same time, I've lost 25 pounds over the last few months and I now see the benefits of having had the tram flap - I'd have a lot more of a tummy, or loose skin, at this point with my weight loss.
I don't know your age, so as for the ovaries being removed it may or may not suck. I was thrown into menopause with the removal of mine, but then I had been experiencing all the "symptoms" from "chemo pause" so I guess you could say I was used to it. The main things were weight gain and hot flashes, I never really experienced anything else significant. I had had my tubes tied after my second child so I had no problem giving up my ovaries as I was done with them; that could be a huge issue for someone who wants kids or more kids. Get the test! It's a simple blood test and you need to know if you have the mutation - ovarian cancer is scary and not usually found until it's too late - so I say JUST DO IT!
Although I still have about 10-15 pounds to loose, I feel good that the weight issue is finally under control. The hot flashes still come and go, but not so significantly and totally tolerable.
The only thing that I'm still going through that SUCKS (for lack of a better word!) is the dang rash in the left armpit area which pops up in spots going down my nerve toward the elbow - some kind of reaction to the radiation. It "appears" to be minor, but it itches beyond what words can describe! I'm seeing a dermatologist regularly and he feels confident that we'll get rid of it eventually but for now we keep trying different treatments because he's kind of stumped!
Wow, shoulda written another hub! I hope you are doing well in your recovery and everything else you're going through - please feel free to contact me directly any time.
@ Fucsia - thank you for stopping by and your comment. You're definitely right, sharing helps - at least for me it does!
fucsia on February 13, 2011:
I think that sharing your feelings is a great help
Cindy Vine from Cape Town on February 13, 2011:
Hey Lily Rose how are you doing now? Just had my second mastectomy this past Friday. They couldn't do a tram flap as they've already used my tummy muscle for the other one, so have had an implant. The doctor is insisting I get tested for the BRAC gene. he seems to think, my ovaries are going to be next. It sort of sucks, doesn't it? Anyway, just wondered how you were doing with your treatment.
Lily Rose (author) from A Coast on October 29, 2010:
Thank you for your comment, Gloria. Yes, it's been a tough road and I'm hanging in there. I should be enjoying life more than I am - hopefully when I get back to my old self I will. For now, what describes my feelings to a T is this statement another survivor made: "I'm beyond grateful to be here, but forever scarred and uneasy."
gloria crane on October 29, 2010:
Hi I am in the same club, it has been 4 years now , it has been a tough road but I have trusted God all the way , he has been there with me. He has brought all kinds of people for me to encourge through this , i know I am a winner either way, it is all in his hands. One thing this stuff makes you do is love life more, even the little things we used to take for granted, you and your mother hang in there and squeeze every little drop out of life. Love in Christ, Gloria.
Lily Rose (author) from A Coast on October 11, 2010:
Thank you for your comment, Ingenira. Yes, I have definitely put a lot of effort into focusing on my health. I gained a few extra pounds with my back-to-back pregnancies nottoo long before my diagnosis, then chemo packed on an extra 30 pounds - I'm currently working on getting back to a healthy weight through eating right and exercising. I've lost around 8 pounds in the last 4 weeks!
Before my breast cancer diagnosis I considered myself a very healthy person. I may not have eaten a perfect diet, but I was thin and fit and would never have thought that cancer would hit. You just never know when you are going to be "it"!
Ingenira on October 11, 2010:
I am glad you survived, and you can share the experience with us. Just curious, do you do anything after the experience to improve your health ?
Lily Rose (author) from A Coast on August 15, 2010:
cbadburkes - I am sooooo sorry to hear your news. I don't mean to sound pessimistic, but a lump having doubled in size in a week is not good - but that doesn't necessarily mean cancer. Just know that if it is breast cancer, it's NOT a death sentence. Stay on top of everything with your doctors and change doctors if you feel you're not getting good enough care. Take notes - if it's bad news, your brain will probably be too overwhelmed to remember anything anyone says. Be strong and be your own best advocate.
That being said, I do hope that your test results are negative! I guess you just need to be prepared. Please feel free to contact me if you need to talk or have any questions. Also, if you want to read more about all of my cancer experiences, it's all in my blog (which I published after the fact, but while most of it was still fresh in my mind) --> http://my-breast-cancer-blog.blogspot.com
cbadburkes on August 15, 2010:
Thank you for writing this. I am a 28, nearly 29, year old woman facing the mammogram that will tell us if I have breast cancer; on Monday- 29 hours and counting, the ultrasound is Wednesday. I have a lump in my right breast that has doubled in size in a week. Last year we did a series of tests on my breast only to hear it was an 'unidentifable mass'. All signs point to a malignant tumor now. Your sharing has helped me more than I can explain. Again, thank you so much.
Best of luck to you, God Bless and Warm Regards from Coastal North County SD ;-)
nikki1 on June 27, 2010:
Thank you for sharing. Very informative.
Lily Rose (author) from A Coast on June 22, 2010:
Thank you, Phil. You know, the fear never ends - at least it hasn't for me - and it always helps to get reassuring words of support from anyone. Thanks for your comment.
I will check out your hubs!
Lily Rose (author) from A Coast on June 20, 2010:
Thank you for your comment. I will keep you and your mother-in-law in my thoughts. You're right, cancer is very unfair!
Candice Collins from WestCoast Florida on June 20, 2010:
thanks so much for sharing your experiences with breast cancer, my mother-in-law has it, had it 18 yrs ago, was treated, then got it again last year, went through surgeries, chemo, etc..now they're telling her she got it again throughout her chest in more of the lymph nodes, I just feel so much for what she's had to go through already and now must deal with again. Cancer is so unfair.
thanks for your honesty, tips and good suggestions, I'll pass them on to her. and will be praying for the both of you as well as all those fighting cancer. may the angels watch over and protect y
urba from Vilnius, Lithuania on May 15, 2010:
I've just posted something new about cancer treatment using herbs and vegetables starting from gene and finishing ,,,in the garden
Cindy Vine from Cape Town on April 07, 2010:
Hi Lily, I managed to avoid the chemo but also had the tram flap and have just written a hub about it, and another one called When mammograms are wrong. I get what you say, I felt the same and agree that nobody really prepared me for what i experienced. I also got that itchy rash on my arm afterwards and under my armpit where they removed the lymph nodes, and they told me it was eczema.
Kelly Kline Burnett from Madison, Wisconsin on February 14, 2010:
The trauma that is never talked about - oh, thank you for sharing! God bless you and your family! You will be in my prayers!
Lily Rose (author) from A Coast on February 10, 2010:
Thanks for your comment, Cindi. I'm sorry to hear you've also been through the same crap as me.
It's still going on with me - I'm scheduled for my 3rd reconstruction "revision" surgery in a few weeks, and the rash in the area I was rediated that was thought to be shingles still comes and goes and no one knows what is causing it.....I could go on and on!
I am trying to get to the point where I can be happy again - especially for my children; I probably would have given up if it wasn't for them; they are my only strength sometimes.
Best wishes to you, Cindi!
cinewton on February 10, 2010:
Hey girl! I am right here with you. This too shall pass. This sucks so much because the medical community has the whole process bass ackwards. They start with the least amount of treatment possible, when people like you and I don't need to waste time fooling around with lumpectomies. I have been a victim of the same brand of lousy care you have had.
Cancer DOES move around. It DOES grow fast. It often doesn't show up on a mammogram. All the stuff we have been told is BULL.
We are not being tested. We are not being punished. Life sucks sometimes and we are just being.
There have been times when I never thought I could ever be happy again. That's BULL too. I can do it. You can do it. Let's show 'em how it's done girl!!!! Many blessings to you!!!!!!!!!!!!! Cindi Newton
Lily Rose (author) from A Coast on January 11, 2010:
I don't mind at all and thanks for thinking of me! I've been thinking of you and whether you have received your results. The pain from the biopsy will get better - just think, you're lucky you have feeling there. Since my bilateral mastectomy & reconstruction, I have no feeling whatsoever in the chest area and belly! It's weird.
callmesplash7 on January 11, 2010:
I hope you don't mind I used your name in my latest hub. Let me know. I don't know the results yet although I have already typed that it was benign because my surgeon had made me THINK that but later I find out that the left side is not so sure that its benign, more of a worry. I should know today or tomorrow. I am doing ok but the hemotoma in the right is like I'm being stabbed when i move and supposed to be there maybe weeks. grrr
Lily Rose (author) from A Coast on December 30, 2009:
Healing Seeker - thanks for visiting. You are in my thoughts. I hope you get your test moved up so you can know sooner rather than later and I do hope it's just a cyst. Keep me posted. I'm here if you need to talk, ask questions, whatever...
Healing Seeker from USA on December 30, 2009:
Hi, Lily Rose. Thanks for sharing your story. December 23, 2009, I discovered a walnut-size lump in my left breast. I do not have medical insurance. On December 28th, the health department told me that it was lemon size. I think it doubled in size in one week's time. My diagnostic mammogram is scheduled for Jan. 5, 2010. I am trying to get it moved up, if it is possible in case it continues growing. They think it could be breast cancer and quite serious. Of course, it could be a cyst that simply needs to be drained. I found your hub and am finding it helpful to read. Thank you for the resources you are posting.
I am journaling about my own experiences on hub pages and posting links I find that are helpful! God bless you!
Best wishes to you and yours, Healing Seeker
Lily Rose (author) from A Coast on December 28, 2009:
Thanks for visiting and commenting, callmesplash7. I know that scared feeling and I'm so sorry you are going through that, it just plain sucks! I hope your test comes back negative, but if it does not, first of all know that you are not alone and second, I am here and if you just want to talk or ask questions I will do my best to help you through it. Feel free to contact me direct through the contact link for me above. Best wishes!
callmesplash7 on December 28, 2009:
I'm so sorry for you. I'm going through my own breast thing (see my hub) and I am scared as hell and feel much the same as you and I dont even KNOW yet if I have it! I read your story and just started crying throughout it. It scares me and at the same time makes my heart break for you. I think I need to find people around me who are going through the same thing if I find out i have it. If I come up negative for it? well it has already changed my life and the way i look at things. the scare alone has made me put an even larger value on life and makes me want to give even more. If I am negative and even if i'm not maybe I can help someone who IS going thru it. I used to work in a hospital and i would see people coming in who had NOONE to encourage them or accompany them, maybe I could be that person. who knows...thx for the hub its good to know what may be to come.
TrudyVan Curre from South Africa on November 21, 2009:
Fantastic to meet a breast cancer survivor. Ty for sharing
Lily Rose (author) from A Coast on September 19, 2009:
Thank you, Pam, for the words of encouragement. I'm not Christian, I'm Jewish, but I do not consider myself religious. I believe in a higher power, but not necessarily that that higher power is waiting for me to die to live my best life.
I'm still struggling with the meaning behind a lot of what that higher power has put, and continues to put, on my plate. Maybe if I believed as you do I would understand, but I can't wrap my head around that kind of thought.
I'm just living day to day and counting my blessings as often as I can. My thoughts go out to you in your times of struggle.
I do hope that you read more about my journey, only so that you can better understand what I've been through and perhaps just to be aware of things "they don't tell us".
Thank you for your comment.
Pam on September 18, 2009:
I haven't gotten to read everything on your site. I did read the part where you lost faith for a time. I will read later to see if you got past that. I am hoping you did.
For about half a day after I got the nasty news myself, I questioned God and my faith. Then I remembered even David asked God in Psalms why He was silent. Jesus himself asked God, "Why have You forsaken Me?" Then Jesus immediately told God, "Not MY will, but Thine be done." The rest of us haven't been forgotten, ignored, or forsaken either. It is just that God didn't promise us a perfect life here on earth...He did promise us a perfect eternity!!!
We each have to die in the flesh, though, to enter into the perfect place He has prepared for us. That wouldn't have been MY plan, or maybe not yours either, but it is God's and we can't change the rules. (Too bad He didn't ask you or me to help make those rules, huh???)
I laugh as I imagine how differently the world might be if God had created woman first, and allowed us to help make the rules. I like the idea of never growing old, myself. I'd have had us stop aging physically in our mid 30s. LOL He didn't ask for MY advice, though. I'd have done away with the death thing, for sure!
I know for ME, being diagnosed with cancer was a shock and I admit I cried. New tears fell/and will continue to fall from time to time, but I have been able to accept this with a strenth I do not possess on my own. I would have fallen apart and never recovered had God not been holding me up.
The tears dried quickly because prayer from family and friends brought a peace upon me that comforted me in a way I can't explain. I know I can do whatever I have to do as long as I keep my eyes on Him. After all, we were born to die and as Christians we know that when we die we will spend an eternity with Christ. This life is temporary but Heaven is forever!
My son Nathan met his best friend Benji when they were about 12 years old. Those two boys had the most fun of any two kids I ever saw. They got into all kinds of mischief. Benji was an only child, but he didn't seem like one. His parents let him live life to the fullest. He was a good kid, always respectful and polite. He called me Mrs. Cundiff even though he was here almost everyday from the time Nathan met him until Nathan went into the service.
One year before Nathan came home we got a call that Benji had been killed in a car accident. Nathan lost it. He loved Benji like a brother. He went from having it all together to being in the pits of depression. He finished out his last year in the service then limped home, a broken man. It took years for him to get his life back on track.
I expected Benji's parents to behave the same as Nathan. After all, Benji was their only child. But they didn't have the same fate as Nathan. Why? Because they were Christians. They had something I didn't understand at the time. I didn't know how they held it together like they did. It took becoming a Christian myself for me to understand that they didn't hold it together. God did it for them. He lifted them up and gave them the grace to make it through. It wasn't easy for them. It has been 11 years and they still grieve. But they make it one day at a time and they still love God.
Our pastor says, "When you find yourself in Hell, keep going." They kept going and made it through Hell. Their faith in God set them apart from others I had seen dealing with death. They impressed me by their walk in faith. I wanted to have a strenth and belief like theirs. So, see, God used a horrible situation to lead others to HIM.
I have so many blessings and I don't deserve any of them. I am thankful every day for each one I have. After watching other parents lose kids, I rejoice each day that my burden is this and not that!
May God comfort you and your family, calming your fears and giving strength to you so you can be a witness to others so they, too, can share in eternal life.
Lily Rose (author) from A Coast on September 15, 2009:
Dale, great idea for a blog! I just left a comment for you on it. Thanks so much for your kind words; this hub, and my other breast cancer ones, of course, are close to my heart and if what I write about my experiences can get out there and help someone else I would be so happy!
Dale Mazurek from Canada on September 15, 2009:
This is definatly a great hub to help people like me understand. You made it simple enough for me to see what you go through without a bunch of scientific terms.
I must say you did a great job.
I liked it so much that I featured it on my new blog. You can see what I am talking about by finding the link in my profile.
Once again thanks for a great Hub
Lily Rose (author) from A Coast on September 14, 2009:
Sure that would be okay - I agree. I like your hub and will link it to mine as well. Thanks!
rmcrayne from San Antonio Texas on September 14, 2009:
I would like to link this hub and your online breast cancer sources hub to my hub on breast cancer. Would that be okay? Right now they show on HP's related hubs capsule for my hub, but that changes. To link and be linked are good for scores. Providing quality info to readers even better.
prasetio30 from malang-indonesia on September 06, 2009:
breast cancer is is serious case. all woman should pay attention about this.never give up and stay with the doctor said. But nowadays there is an alternative medicine can healing this disease. never give up. stay focus and optimistic.
Sarah @ Oakbriar Farm on August 20, 2009:
Thanks for the comment on my post about my mother's cancer.
I'm so sorry you're going through this. After watching my mom, I can't imagine undergoing treatments while taking care of young children. But you sound strong, and I'm wishing you the best...
Lily Rose (author) from A Coast on August 20, 2009:
Thank you all for the supportive comments. Writing about my experiences has certainly been therapeutic and it makes me feel even better to know people are reading it.
Have to Laugh - always good to have someone really know what I'm talking about! All my best.
Have To Laugh on August 20, 2009:
I wish you peace & happiness, it is a very lonely road but there is light (dim in the beginning!) but it does get better. Keep up your brutally honest banter it is good for all of us! fellow cancer traveller.
Lila on July 31, 2009:
Very touching. Very real. Not the usual stuff.
Thanks for the posting.
Lauren on July 30, 2009:
What an interesting posting.
Having gone thru it myself, I can feel for you.
So sorry what you went thru.
ChrisTeo on July 28, 2009:
Wnderful experience to share with others. Would it be okay if I reproduce this sotry of yours and share with many others (of course, I would credit your name to this story). Also may I ask some questions before that .. just to be clear about your treatment.Thanks for sharing.
Tom Cornett from Ohio on July 23, 2009:
Amazingly honest...a wonderful hub that anyone fighting cancer could read and relate to. I wish you well. Great job!
Lily Rose (author) from A Coast on July 23, 2009:
Thank you so very much - that means a lot to me. Reinforcement from anyone is never a bad thing!
earnestshub from Melbourne Australia on July 22, 2009:
I think you are a very capable lady, I have survived cancer and wished to share my frustration at the time... I did a lousy job of it then, but I am ok about it now. I hope for the miracle that puts a smile on your lovely face, and wish you all the best with your health.You write very well by the way!
Beth Terry on July 22, 2009:
This is so great! It is so like you to take your own experience to turn around and help others. I look forward to keeping up with this hub and your journey to being cancer-free!