They say if you want to hear God laugh, tell him your plans. Well, He is laughing mightily!! When the call came that I have breast cancer for the third time, I was adamant that I wouldn't undergo a mastectomy - unfortunately, the onc surgeon does not think she can do a lumpectomy because of a previous lumpectomy and the difficulty of providing a blood supply to the remaining tissue.
This is my 6th primary cancer overall:
Liver 2002
Right breast 2004
Ovarian 2006
Left breast 2009
Lung 2016
and now right breast again.
I did the "wise" thing and asked for a cancer coach - she called and I can tell you all about her life and her travails with a mastectomy, but she can tell you almost nothing about me. I was more therapeutic for her She told me how extremely painful it is, how hard it is to recover, how she doesn't have good range of motion in that arm, etc. Not exactly good for me.
I am scared. And I am tired, very tired of fighting. It has been 20 years last April that I entered this war on cancer, and I do not seem to be winning - it just moves to a new place. I have supported others going through different types of cancer through the years and found the experience very rewarding. Now it is my turn to need help.
Because of the lung cancer, which I still have but has been stable, and severe atrial fibrillation, I am scared of undergoing even minor surgery - I don't want to wake up on a ventalator or in the ICU. I have thought of just doing nothing, but that isn't an option because the breast will just turn into gangrene and the oncologist said it wouldn't kill me, but I would wish it did.
Always the "up" person, I just don't have the energy to fight anymore, and yet the war has come to my doorstep. I am having panic attacks (on anti-anxiety med and it helps) about stupid things like the bras that are available are ugly; the prosthesis is heavy and cold in the winter, hot in the summer; I fractured my back in 1988 and have slept only on my right side since then, and with the drain that won't be an option; and most important, I don't want any more violence in my life.
Please, help me get out of this funk - I was part of a wonderful support group in Gilda's Club, but they closed many years ago and the support group now only meets once a month instead of weekly.
Please tell me your story - be brutally honest, but please also be at least partly positive.
Written by
anrean
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First I have to say that I am so very sorry that you are going through all of this.
You can do this, you are stronger than you realize. With all you have been through in the past, this will be a cakewalk.
Have the surgery, dont worry about wearing a heavy uncomfortable prosthesis, just be you. If you really need fake boobs, maybe did what teenagers would do when the wanted bigger ones, stuff a bra with rolled up socks etc. But if it were me, I would go au natural. Besides bras are uncomfortable, and can cause pain.
I have never had breast cancer, but I have had cancer . Basil cell skin cancer on the tip of my nose in 2006, and squamous cell on my cheek in 2007. I've also had squamous cell lung cancer twice 2013 & 2018. Lost both upper lung lobes to it. The remaining lobes are riddled with emphysema. I have also had other unrelated surgeries.
We have a cancer group, but it meets once a month, at 5 pm.
Have you reached out to Imerman Angels? They pair mentors with mentees. They are a one on one cancer support community.
There # is 866-463-7626. Email is info@imermanangels.org. You can also find them on facebook.
In the meantime, message me if you have questions, or just need to vent. I am here.
Nights are the worst. I get into bed and try to sleep on my left side, but that just aggravates my fractured back - I have slept on my right side for 42 years! I am scared of the pain - liver cancer, where they cut me from my sternum down to my belly button and across to my right hip seems like a cake walk! At least then I had free use of both arms. I am afraid to lose the free use of my right arm. I don't really care about missing a boob - have been carefully saying goodbye to it each day so that when it is gone it won't be a shock. I am just tired of cancer all around - it has been 22 years and 5 months of waging a war I don't seem to be able to win. Every time I think I am just beginning to get into the clear, it comes back with a vengence. I just found a bra that finally worked with what is left of my left breast (lumpectomy took 1/2 of breast) and right breast (lumpectomy took 2/3 ).
Boy what a tough time, please don't give up and keep fighting. I have only had an aggressive breast cancer which I had a lumpectomy for and left lymph node clearance chemo and radiotherapy. I have one flat breast but so what also my hair is fairly bald still after 10 years so what I have a fat arm with lymphoma but so what, my ankles still swell up after the chemo but so what. In fact due to all the treatment and tablets I went from a UK10 to a UK14-16 but so what. Three years ago I watched my dad and aunty die of aggressive cancer within 6 months of each other they were not well enough and too old to have the treatment. I wish you all the best and hope that you beat this again please keep fighting and hope you get the support network you need.
Sister/ YesssssWarrior/Thriver GOD is not laughing at the challenges we go through, but GOD is allowing for 14 years of healing every time you had that early detection, and I know (pray) healing will be in your body once again😇. Keep the faith Sister/Warrior/Thriver, and yessss Over-comer😀. GOD has kept me here 14 years with NED, when the 38 year experienced Oncologist I saw then said ,even with treatment I would not live to see 2008. DR/GOD over-rides all of the medical reports of prognosis Amen👍😇
I don't believe in the prognoses that we are given. In 2002 I had a 25% chance of getting off the operating table, and a 5% chance of living 5 years...and I am still here! It is just that I am tired of cancer. I am tired of being sick, and I am tired of being in constant pain. Ah, but this feeling too shall pass. I wish you all the best as you continue to thrive!
Damn I'm so sorry. You've been dealt a really rubbish hand.
My breast cancer diagnosis was last January. I had 3 cancers that took up pretty much my whole right breast. The only option for me was a simple mastectomy without reconstruction with sentinel node removal, and quickly, because one of the cancers was aggressive.
I had an ovary removed a few years ago (not cancer), and by comparison, the mastectomy was relatively easy for me. I suppose a breast is possibly one of the least invasive removals of the body parts; it's all superficial soft tissue, and you don't need to cut through any organs to get to it. I had small breasts (32C) and was quite a small person, which apparently helped towards only needing one drain for a few days. I had a month off work, did my exercises religiously and did a lot of massage to the area once it had healed. 18 months on from the surgery, my scar is hardly visible, and I have full movement of my right arm.
I needed chemo for 5 months, Herceptin injections for a year, aromatase inhibitors for 5-10 years, and am just starting 3 years of 6-monthly Zoledronic acid infusions for my bones. I discovered that side effects are my super-power, that the PICC line for the chemo had caused nerve damage, and the chemo caused peripheral neuropathy. But you probably know about all that stuff already.
This is the age of the bralette, and most have pockets. I have a prosthesis, but only use it for swimming. The rest of the time I use breast forms which slip into the pockets. I was only saying to my husband last night that I probably ought to buy up a big supply while they're in fashion, because they're so comfortable. They do slip around a little, but that's a minor problem.
Emotionally I still struggle, even now. It changes you. And you're allowed to feel like giving up. But the very fact that you're here asking for help shows that you aren't really giving up. You're just having a really rough time at the moment.
I'm in the UK so our services will be different, but I'm more than happy to answer any questions you have. Feel free to message me.
Thank you for responding - knowing that you have "fully" recovered use of your arm makes me feel 100% better - I think that is one of the things that bothers me most. Today I bought 2 flannel shirts - very pretty - to wear while recovering - they are the first warm button down shirts I own for winter! I learned not to worry about what the breasts look like when I lost 1/2 of the left breast and 2/3 of the right breast, so that really isn't an issue. I figure if someone doesn't like the way I look they won't like ME anyway. Your story is exactly what I was looking for - hope is a mighty powerful thing and you have given that to me! THANK YOU
Though your cancer story is different than mine, there are alot of similarities, too! I'm at 16 1/2 years since diagnosis with metastatic lobular breast cancer, with bone mets only. That "only" lasted 14 or 15 years, until shortly after my beloved wise ol' onc retired! I miss her so much! I've had cancer cells show up in a ureter, right cerebellum, and extensively in lymph nodes between my arm pit, collar bone and breast. Besides breast cancer, I have allergies (mostly hay fever), Hashimoto's Disease (low thyroid), spinal stenosis, atrial fibrillation, arthritis, leaky bladder, lung damage from a few cycles of Ibrance, mobility issues related to badly fractured ankle in 2012, and my most bothersome current symptoms/side effects are foot pain with standing/walking, spots of extremely itchy rash. I'm constipated and sometimes laxatives or prunes or stool softener send me into hard hitting diarrhea. I, too, used to be able to offer support aqnd education to others with bc and mbc via a phone "hot line". No where near the energy or predictability to do that any more! During the last several weeks, I've felt more overwhelmed than since I was first diagnosed! My onc referred me to palliative care and that PA prescribed stronger pain meds and anti itch med. Plus I really really like her alot! Alot. I think that doing some of the exercises that she gave me, along with exercises from PT and OT could help. I don't enjoy exercising, except for swimming. I don't know if it is that or fear that it really won't help me feel anybetter, or something else that keeps me from starting a regular daily exercise routine. I keep telling myself to get up and do it, lol. Something I thought of when I was reading your note was something that has helped me feel more like myself on the inside--CDs on living with cancer, relaxing, better sleep, done by a woman named Belleruth Naperstek. I first heard her cancer audio at a weekend bc retreat sponsored by the cancer center where I am treated. Her voice is very soooooothing! I just googled her name, even misspelled it, and found an online place to buy her CDs. That was a long time ago in techieland and she has iPod downloads and whatever else is popular now. There are still things I enjoy--music, cats and dogs, family and close friends, chocolate. There is so much in the world right now that is stressful! Covid, climate warming and all its manifestations, politics and divisiveness...... adding cancer is another huge stressor. I have to find ways to laugh, and play and set all this stressful stuff aside. Even for a few minutes. When I was in the bathroom this morning, I was struck by the coincidence or irony of Gorbachev and Queen Elizabeth dying so close together in time. Never would have guesssed it ahead of time. Dear cancer journey companion, I hope you find joy yet in life, and can find peace if only a bit at a time.
hi. So glad you reached out for support!! I am sorry this cancer troll has peaked out again for you. I’ve been in treatment just 2 years so I don’t feel I can speak to some of your message.
Everyone spoke so well of many of the topic you asked about. After finding cancer in RT breast and Dr recommended lumpectomy. After gathering info I chose to have a double mastectomy in 2020. They did find cancer cells in left breast tissue. I tried implants and they were not for me; I have been over the moon happy with going flat (used to be bra hating big girl with 42DD). If I am laying down I do still feel some pain in left shoulder if I move it over my head and leave it there—i]arm gets stuck and I’ve needed to use my right arm to move my left arm 😅 . The skin on my chest is not too tight and only a light scar remains- last surgery was a year ago. I was 100% devoted to after care—lotion(7 months), PT(1 month) binding (I think 3-4 months but I could be off)
It is painful when you wake up from mastectomy surgery. But…. For me he pain meant the surgery (well that one at least) was over and I could begin recovery. I needed help with everything at first and had a visiting nurse for I think 6 weeks (maybe longer). As you know the drains are temporarily going to reek havoc till they are removed.
I have up days and down days. I find anxiety is more of an issue after diagnosis. Watched a TED talks that said (it’s gotta be true!) that if you stop 5x day and take 3 deep belly breathes (in nose/out mouth) —- peoples cortisol return to normal levels. Which helps your body be healthier and mind clearer.
Your statement about wanting the violence to be over. It can seem like violence can’t it? Surgery is aggressive. I’m so sorry your health and understandingly have concerns about putting your body thru another surgery. You have done so much trying to be your healthiest self.
In the TLC catalog I recently saw a new type of prosthesis. They are improving how they attach and how to make them more tolerable to wear— It has cooling chambers and ventilation. Of course they are around $400. Maybe insurance helps?
I’m going on and on and I don’t feel like I’ve answered your questions.
You and you alone will know how much treatment you want. Other people may agree or disagree with you-that’s ok. My drs disagreed with my surgical choice but they respected my choice and it ended up being a really great choice. You sound like a resourceful and intelligent person; you will get through this. 🙂 Not trying to sound like a cliché.
Thank you for your honesty! You have helped me immensely!! Yes, I am mentally and physically exhausted, but after reading your reply I feel like I can stand up and fight this! Again! I don't care about being flat on one side, and your comment about the surgery being over means you can start to heal was very powerful! I can do this - not wanting to do it is getting in the way. Through the first 5 cancers I was always positive and up - this one has kicked me in the head. But last weekend God and I had a long talk, and I felt more calm. It comes and goes, but stays longer each time. I wish you the best as you continue on this journey!
Andean, I’m sending love and hugs! You’re a warrior in a long campaign. I hate the word “battle” ; I prefer to see any one of my chronic conditions as opportunities for letting go of things that aren’t important. Ive had three bouts of breast cancer, was diagnosed with Parkinson’s disease seven plus years ago, plus arthritis and Lyme disease. At 75 I have to accept that my conditions plus the side effects of the anti hormonal medication have affected my stamina. I no longer feel safe to drive at night and avoid steps without hand rails, for example. But as far as having had one lumpectomy, radiation twice 36 years apart, one mastectomy with lattimus dorsi reconstruction and surgery a year ago to remove the implant that caused me to develop sepsis and almost did me in, losing a breast is no big deal. My prosthesis is comfortable and looks very realistic in properly fitting bras and bathing suits. I’m followed by radiation oncology, my oncologist and surgeon and have finally accepted that I must keep appointments with them plus my neurologist, dermatologist, primary doctor, dentist yes it’s ridiculous lol. But it’s so worth it to see my grandchildren grow up and enjoy my life. I took IBrance for one month before surgery and had no obvious issues but it does affect our immune systems so be careful around sick people and get your flu COVID and other vaccyper your doctors’ recommendations. I think of life as all of us on this earth are going to have to deal with some very difficult challenges. Breast cancer is a chronic condition but we are all so fortunate that there are many treatments that can extend our lives with manageable side effects.
Hi Please forgive me for not answering for so long. I re-read the post and had to step back and think after a long cry. The feelings are still raw.
The mastectomy surgery went well and I did not wake up on a ventilator, which was a very real and frightening possibility. It has been eight months now, and I have learned to adjust...for the most part. I ignore most of it - it is my way of surviving. I hate the way I look, so avoid mirrors until completely dressed. The prostheses are heavy and hot in the summer, so I often wear an old bra that has very firm cups, and pray that no one notices if the cups go flat.
I am still tired - physically and emotionally. I've lost so much over the years to this terrible disease. Perhaps the hardest loss was damage to my heart from radiation scatter. It has slowed my life down so much. Now they can pinpoint radiation, but 20 years ago was a different story.
Overall, I am a happy person - I refuse to allow this terrible disease to control too much of my life. I wish I could go back to work; I wish one day up didn't mean two days in bed. But it is what it is, and I cope as best as possible.
I’m just reading your older posts after seeing your latest one today…what a journey you’ve been on! While I’ve only had one relatively “simple” experience with breast cancer (2022 - lumpectomy, radiation, hormone blocker) I’ve had other health issues that continue to be a challenge. Like you I’ve tried to stay positive, but sometimes you get tired!
I’m glad you’re on the healing side (again!), that you can continue to be positive and that cancer leaves you alone!
Cancer is never "simple" but I understand what you mean. I try to stay positive, but sometimes that just isn't possible. I know we are blessed to have breast cancer now instead of 20 years ago - the changes I've witnessed are astounding!
Cancer hasn't left me alone, though. I have had lung cancer since 2017. It is stable and so far all I need do is keep an eye on it. At some point it will rear its ugly head, but for now I appreciate that it is quiet.
Hi anrean. I'm so glad you wrote. I'm sorry to learn that your heart has been compromised. My surgeon said my insurance would not pay for the pin point radiation; only the general radiation. I was concerned about that when we opted for the mastectomy. And you mentioned lung cancer in your next post. My Aunt Helga had the lung cancer. She spent all her time throwing parties to try and get to see all the relatives. What are they doing for your lung cancer ?? Here's a Big Virtual HUG. xxx
if you’re still looking for a support group there is a wonderful group that meets on Tuesday evenings at 6:00-7:30 EST. It is open to anyone, and there is no charge. The facilitator is a two time breast cancer survivor, and more recently, skin cancer. Her name is Cindy Sheridan-Murphy. The group is called Each Monent We’re Alive. You can search for the website. It is also on Facebook. I am happy to answer any questions. I was dx three years ago this month and had a bilateral mastectomy.
I am sorry too, to hear what you are going through, but you have got to be positive. They are finding new cures for it daily !! I also have two very dear friends that have been battling it for a considerable amount of time, both having many operations, like you, several operations, stable but its still there. One isn't 40 yet !! Got for the battle again, as I said in between time, they might find another new drug, that perhaps you could take in place of surgery...onwards and upwards MacDuff xxx
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She told me how extremely painful it is, how hard it is to recover, how she doesn't have good range of motion in that arm, etc. Not exactly good for me. 
GOD is not laughing at the challenges we go through, but GOD is allowing for 14 years of healing every time you had that early detection, and I know (pray) healing will be in your body once again😇. Keep the faith Sister/Warrior/Thriver, and yessss Over-comer😀. GOD has kept me here 14 years with NED, when the 38 year experienced Oncologist I saw then said ,even with treatment I would not live to see 2008. DR/GOD over-rides all of the medical reports of prognosis Amen👍😇
Natural therapies worked for me
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Survived right side breast cancer, what are the chances of getting it on the left side? 
Oncotype DX Score 59
