Hi all- I love this site and the camaraderie that you all give me. Always feel less alone when I read your posts. And have learned so much!
I was diagnosed in May 2020 , HER2 positive stage 4 found Mets in lymph nodes and trachea area. Treatment has worked great, Ibramce and exemastane (way better than letrazole , got off that six months ago), I am so far NEAD. And everything is shrinking.
my question- I hate that I still have this lump in my breast. Onc has said riskier to take me off Ibrance to do a surgery that won’t necessarily change anything , Psychologically it is awful to have this inside me and I can feel it actually ache sometimes. Has anyone had a lumpectomy to get this insidious thing out?
Thanks all, love you incredible bad ass women.
Elizabeth
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Georgelila
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I still have my breast tumour because surgery isn’t considered under the circumstances here. After 8 years of treatment-7 years of that time on Exemestane, the tumour is no longer visible on the scan. One benefit of retaining the tumour is that it clearly shows when treatment is working.
Taking the tumour out at stage four is done sometimes but a study showed it doesn’t make much difference at all to the outcomes of treatment. A post on another site elicited answers from both the haves and the have nots and essentially those who had the surgery didn’t regret it and those who didn’t have it didn’t regret it either.
Surgery does carry risks and a friend feels like you do but her cancer was caught early. If it hadn’t, she’d have gone to a private hospital and had the surgery at her cost. When she had her lumpectomy she ended up with an infection from cellulitis. Ironically or unfortunately her sister got early breast cancer too which turned into stage four cancer very quickly. She had the tumour removed and got cellulitis. Another sister decided to have prophylactic surgery. She got an infection (cellulitis) that led to the removal of the implants and it took 18 months before the breast surgery was completed. And she didn’t even have cancer. Cellulitis is on your skin and spends its days looking for a tiny spot to get inside the body. Everyone I know who’s had it has ended up in hospital for a week. My father got it in his legs and he had no idea how it happened but that’s a common story.
Having the tumour removed at stage four would be done if it made a positive difference. I do understand how you feel but I don’t feel the same way. I expected to be offered surgery when I was diagnosed de novo but my doctor soon disabused me of that idea. I was relieved as I was frightened of the thought of surgery. If evidence existed that it would increase my survivability then I’d definitely have it but it doesn’t.
Treatment in America is different to Australia but have you considered asking your insurer for advice? They’ll be the ones approving surgery so you might as well find out what they recommend.
I totally agree with Kerry. I'm Canadian and was also diagnosed De Novo in 2018. I was in the medical community so had many conversations with collegues as to if removing the breast tumor was beneficial. By all literature standards it is not beneficial at all. Despite having very extensive bone mets my actual breast tumor was very small. Since several months into my first line of treatment my breast tumor is not visible but was used as a marker of treatment success.Unlike Kelly I guess I do not understand why anyone would want a surgery that will not change overall outcomes. It comes with many risks especially as an imunno compromised individual. If there was any true evidence that it made a difference I would definitely re-consider. The US healthcare system is very insurance based and basically the physicians tend to order many more in my opinion unnecessary procedures, tests and yes even surgical procedures as long as the insurance will cover. Does that make it any more beneficial to patients....not necessarily. It should in my opinion be a risk versus benefit issue and right now there is not enough evidence to support having the breast tumor removed with a Stage 4 diagnosis. Take care.
There are risks but it’s a risk benefit thing. I have a single 38G breast and really painful shoulders. Having to Wear a bra is still essential but really challenging and painful to get on /off. So I’m scheduled for a mastectomy.
Bikebabe, I can't imagine how much discomfort you are in with a solitary breast of that size so your decision to get the mastectomy and the surgeons willingness to do the procedure is certainly warranted. I read your profile and you said you had a previous lumpectomy for a small breast cancer in the other breast and then it was discovered on a follow-up scan many months later that you had a pleomorphic lobular Breast cancer of significant size in your other breast. I can't imagine what a kick in the gut that was. How much of your previous breast was removed? You said lumpectomy and I am wondering if you will still have discomfort after your existing breast is removed if the remaining one is still of significant size? Sorry having been in the medical field before diagnosis my mind always looks at the full picture. Take care.
My brain's gone to mush and not sure i understand the question. i had small lumpectomy on Right side for IDC 7mm and sentinel node out in Dec 2019 and then radiotherapy. Follow up mammogram 16 mths later (covid delays) and found what they thought was 1.7cm mass on left side (tomosynthesis and MRI) and this turned out to be the biggie pleomorphic >8cm lobular with 19/34 positive nodes taken out after first initial lumpectomy. Even my surgeon thought the original right side might have been pleomorphic as well but covid meant no scope to take off the right side as it was deemed cancer free at the time having just had radiotherapy. Then after the 11 weeks chemo, was told I had multiple tiny metastatic deposits in spine which precluded removing right breast. I have found the single breast to be very challenging in a functional way - not bothered by its aesthetics - but trying to get supportive front loading bras, or bras you can swivel round even in 35 deg heat without chinese burns has been an expensive and futile exercise. So many people say try this, i do, and it's often not available, or not up to my size, or uncomfortable. I'm still down to have a mastectomy despite known infection risks and my hefty comorbidities/cardiac risks.
I did have surgery but it was before they started me on Ibrance. After they did the tissue analysis they knew they didn't get everything in the surgery because my tumour was deep and attached to muscle. They started me on Ibrance immediately and I had radiotherapy 4 months later
I'm in the UK.My initial oncologist didn't know I was stage iv as he didn't ask for scans to be done. It was in my brain, liver and lungs when I had my lumpectomy.
I had a very painful recovery from surgery. It took around 6 months for the nerve endings to settle.
I've had various chemo regimes and several bouts of radiotherapy since diagnosis in 2019.
Looking back would I have foregone the excision if I'd known I was stage iv? I don't know. Still being able to feel the lump after all this time must be disconcerting.
If removing the lump carries a risk, could you perhaps change your mindset instead?
I have had metastatic bc since initial diagnosis in early 2004, over 19 years ago! I had a lumpectomy (my onc called it a partial mastectomy) early on...so long ago that I don't remember if I'd started Letrozole before that procedure. Onc and surgeon both told me that when diagnosed at stage IV, mastectomy didn't improve survival rates. A few years later, after some progression, I had a second lumpectomy in same area of same breast. One of my major ways of coping with this lousy rotten cancer has been to learn all I could. Books about BC and MBC from reliable sources, conferences like MBCN, NBBC, Share, and the biggest BC conference in the US attended by BC specialist oncs, the San Antonio BC Symposium. Of those, I enjoyed the MBCNetwork conferences the most. They offer alot of time for us to mingle, talk with one another and presenters. At the first general meeting, they ask for all who've had MBC for 3, 5, 10. 15, even 20 years to stand up (those specific times may not be exactly right, but is is a wide and long range, they even had a 30 year survivor!) and many of us relative newbies found that amazingly encouraging. When I was about seven months into treatment, the cancer center in a mid-sized city where I get treatment had a weekend retreat for bc patients. I went, a tad nervous over whether there would be others there wiith stage IV, buut almost 1/3 of the attendees were! And they had times for us to meet in smaller groups with same stage.....I loved that! First time I met others with mets.
Friends who'd had early stage MBC told me that getting a single mastectomy can have a big negative impact on balance, so I decided that if a mastectomy was ever strongly recommended to me, I would push hard for a double, with no implants as those can make it harder to find any return of cancer! Balance may not be an issue for those with small breasts.
I had cancer diagnosed in my right breast in 2008 and after 2 failed lumpectomies I was looking at a mastectomy. My left breast shown to me by the radiologist showed a lot of DCIS so I elected to have a double mastectomy. A radiologist told me in the last 6 months that they would never have removed the left breast today. I had researched single mastectomies and didn’t think it was a good option for me. I was pretty shocked at how debilitating the surgery was but I was back to working part time in no time at all. Diagnosed stage 4 2018 and doing well on Faslodex and Verzenio.
Georgelila I’ve been off Ibrance since November. I have scans every 3 months which have been stable. My blood work has shown improvement since being off Ibrance, and I am feeling so much “more normal “ now.
Hi Georgelila, I was diagnosed stage four from the get go in 2015 with bilateral cancer. The right had the larger mass but they found a couple smaller spots in my left. I debated on lumpectomy vs mastectomy for the month prior to my surgery and after reading as much as I could went with the lumpectomy. After surgery I had a PET scan and then found out I was stage four in my spine and a few other spaces. I was on Ibrance for 3 years and am still on Letrozole with Xgreva. I guess my regret is with surgery (no matter which procedure I went with) they had to take out so many lymph nodes that I have to wear sleeves to stop lymphedema. I think for each of us our journeys are so different so what your decision is will be what is best for you. Hope this helps a little. Take care. I just had my every 6 month CT/bone Scan and my lesions are stable at 8 years and counting. So hang in there
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