I have been building up courage to talk to you since I joined your wonderful forum and here I am !!
I had a mammogram April 2019 which was clear, feb 2020 find lump under arm and 1St April ( what a sick April fool) was diagnosed with a 4cm and 2 cm Tumor in breast and ducts disease. 2 nodes in Chest lit up on pet scan but three areas on spine which showed on ct didn’t light up on pet. Wham bam u have Mbc. Have been on Ibrance and letrozole since 26th May reduced in Oct from 125 to 100 as regularly low neutrophils. Tolerating medication well and last scan showed reduction in all areas.
Have any of you had surgery after medication to remove tumour/ breast as all I can think about is getting rid of this alien body as it’s a constant reminder of my situation. Any comments would be welcomed
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Archiedog
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I've been on the same med combo for 4.5 years. Initially I asked about surgery and my oncologist said since it's spread we are focused on the metastasis and not the breast. At the time treating the breast with surgery would delay the needed treatment for my liver. We've talked about it since I've been stable but given my breast tumor has basically disappeared we are staying the course with treatment. There's not a clear school of thought on this issue that I've seen in doing the research. It seems to be very situational - no clear benefit/risk in a general sense but situationally there are cases where it's been a course of action. Certainly something to talk with your onc about. And maybe even a second opinion. That may give you peace of mind if you find consensus among opinions or you find a different opinion with why it might be good in your case.
Thank you it’s reassuring to know you have been on the same combo fir that period. Do you mind me asking was your ‘alien’ of a similar size to mine, and if so is it the med combo alone that has reduced it soooo drastically?
I don't remember how big the one in the breast was but it was very noticeable to the touch. I had chemo first and then onto Ibrance/Letrezole and the meds reduced it to where it's not seen on scans nor felt on exams.
Hi Archiedog,
I'm so glad you posted your question! We all learn so much from the discussions that follow...
From what I've seen on this board, most people do not have surgery and rely on the "systemic treatments". But I completely understand about wanting to get rid of the alien in your body - I would feel the exact same way...!
There was a study posted here several months ago which indicated that doing surgery to remove the primary tumor did not provide any benefit, sort of "net-net". The way I read it, though, was that some women benefited but others were "harmed", i.e. adverse effects of the surgery. My gripe with that study is that they didn't break down the data to sort of define the traits of those who benefited (younger? more fit? ...) vs. those who had adverse effects of surgery (older? other medical issues?). To me, it seemed that it's possible that people with a low risk from surgery could benefit from it? I'm sure there's more research out there....*If you want me to try to find the study I read here, let me know*
The argument against surgically removing (or fully radiating) any of the tumors (primary and other) is or includes the "fact" that they're not "cancer factories" - someone here used that phrase and it helps me - i.e. their existence doesn't, like, worsen the course of your disease. But, I'll tell 'ya, I've turned this over in my mind countless times, can't quite accept it as true...I think I came up with a solid counterpoint recently, had an "ah-ha!" moment, then forgot the example! I'll do my best to remember it, but my track record on that is not good...
But I have seen several women here w/ MBC who grappled with the same decision and were able to get the breast surgery. I don't know how their circumstances might have differed from yours, but maybe it's about a doc's individual approach? I don't know, but I do hope you get responses with more details about this scenario...
Thanks so much for replying Lynn, always considered myself very fit and well before this blindsided me, can see it from both angles . It’s just a constant physical reminder. Really appreciate your input and time
Hi and welcome. You will find this site so helpful. Ladies from all over the world join in and find great comfort in sharing feelings.
I had Breast Cancer Stage1 in 2013. I had radiotherapy was advised against oral treatment as my lump was small. I received the all clear after five years, then, six months later was diagnosed with Stage4 Metastic Bone Cancer with Cancer in my lungs and lymph nodes. I was so shocked as everyone else is on here with the diagnosis.
I have been on Letrozole, Pablociclib (Ibrance) and Denosumab since Feb/March last year. There has been the usual side effects, slight thinning of hair, joint pains and fatigue. It varies through my 3 week cycle. The 4th week gives a little light relief when I’m off Ibrance.
Please keep posting on here. You will find great advice and also ladies that are going through the same journey.
Best wishes
Cheryl
Hi there and welcome. Glad you found the courage to post.
I was diagnosed on April Fool’s too (2019). A date we won’t forget!! Sorry I can’t help with surgery as I have only had tablets for treatment since this diagnosis. Some ladies on here have had surgery and done very well. I am sure they will post. Good news you are coping well with the tablets and showing reduction - that is fantastic news.
I’m glad you plucked up the courage to post ...you’ll find this a lovely community of ladies who are so supportive ! I’m glad to hear that you’re tolerating Ibrance and that you are already seeing results ! I have been fortunate to have , so far, had a good run on Ibrance (stable since my first post treatment ct scan ).
As to breast surgery , have you discussed it with your onc ? I have had breast surgery ,(Nov 2017) , but my right mastectomy /reconstruction and right axillary clearance (all nodes removed ) was done just before I was diagnosed with stage 4/bone mets (de novo), and then I started on Ibrance .
I have also had a left breast reduction , one year after starting Ibrance , (Nov 2018) and for me , it worked out well, (I did have to have an infection treated with antibiotics). My oncologist/ breast surgeon both agreed to the reduction operation , as I was mid fifties , my bone mets were stable , my bloods were good (my surgeon /onc wanted my neutrophyls to be above 2 to operate) and I was otherwise fit and healthy and this procedure was done as a day procedure ( compared to the 3/4 days in hospital previously for my mastectomy/ reconstruction /axillary clearance, which obviously had greater risks ) .
There is a lot to consider here , not forgetting covid ! ...but I would discuss it with your onc and take their advice as to how it would affect your ongoing treatment and the best time to have any surgery .x
Guess I’ll be the one to give you some info on the other side of this issue. Here’s a little history ...I was diagnosed in November 2018 with MBC with no prior history of breast cancer. I had 3 tumors in my right breast. They weren’t very big. I had cancerous lymph nodes under my arm and a spot in my right lung. The biopsy revealed her2- so I was put on Ibrance and letrozole. My next scan showed progression. It was little spots all over both lungs. I had a lung biopsy. What? It’s her2+. I was taken off Ibrance and started IV chemo of herceptin perjeta and taxotere. It worked wonders. After 8 rounds the Breast tumors were gone. Only now had like 4 places in right lung. I continued on herceptin and perjeta without the taxotere. Lungs Mets were shrinking but breast tumor started growing back. So I insisted and had a mastectomy in Oct 2019. I had all those lymph nodes removed too. No reconstruction. I didn’t want to put myself through that. My surgeon told me I didn’t have to worry about that her2- anymore. He said he got it all. That made me happy happy. I had sbrt feb 2020 on biggest spot in my lung. My last scan showed one stable place in my lung that’s only 4mm. It’s the best scan I’ve ever had. I think because my “aliens” had different receptors that it medically made sense to have the mastectomy. But mainly it has helped with my peace of mind. I’m so glad I had it done. The recovery wasn’t fun but I made it through. I feel good now. Looking in a mirror at myself with short thin see through hair and only one breast is still hard. I put on my wig and fake breast and I look and feel pretty much normal. By the way... I’m 52.
OMG..... that is ME! I have wanted this “thing,” out of my body since it’s discovery on Halloween last year. SCARY alright!!!
I was put on Ibrance 125 mg and anastrozole on 1/4. My surgery was moved from 11/6 to 12/4. I was SO disappointed to have it postponed. They will do a sentinel biopsy, and possibly axillary dissection.
Can’t wait for it to be out!
Colleen
Hi,
I can understand how you feel about the “alien” in your body. I have referred to mine as my “enemy” so I know where you are coming from. When this whole thing started everyone thought I was early stage, so there was a lot of discussion about surgery, chemotherapy and radiotherapy. I was told a mastectomy was not necessary. I could have a lumpectomy or therapeutic mammoplasty. I chose the latter. But the more diagnostic tests were done the worse things looked and I was finally told the disease was metastatic. So surgery was cancelled. It felt like such a letdown, as I wanted the breast tumour removed. It was a constant reminder of the disease.
I’ve been stable since my first post-treatment CT scan in August 2018 so it looks like I am going to be allowed to have surgery after all, but I will learn more next month. I would discuss your concerns with your oncologist and see what you find out. Don’t forget that many of our treatments are very effective at shrinking the tumours and keeping things stable, which is also good news.
I have been considering surgery on my bad knee and worried about progression. My daughter, an OR nurse, suggested I wait until they have a better grasp on Covid in case I would have to go into rehab. So many of these places are hot spots. This made sense to me. I will wait until next spring and reevaluate. Certainly with Covid we need to be vigilant. Best of luck -Madlyn
I have been on the same medication combo for 3.5 years. I have never had surgery to remove my tumor. I had the tumor and a leison on my right hip at initial diagnosis. Been tolerating medication well so far. Good luck!
In 2000 when I was diagnosed with stage 1 BC they offered me lumpectomy, radiation and tamoxofen or mastsectomy and tamoxofen. I chose the latter. It still came back in 2017. My thoughts are that stage 4 doesn't need the breast tumor removed because it has already spread and will at some point continue to spread regardless. I am also on Ibrance and have done very well on it.
I have had surgery. I had breast cancer the first time in 2015. Clear mammogram in April and a socking great visible lump in the July. Had a lumpectomy at the time - two in fact to try to clear the margins – and lymph nodes removed. July 4 years later - another lump. I immediately said - mastectomy this time. And I recall the my breast cancer surgeon saying, we need to wait for the PET scan result because if it had spread there would be "no point" in doing the operation. This upset and terrified me in equal measure. The PET showed extensive bone mets. I said I still want the mastectomy - I just want it gone. And he agreed immediately and removed the right breast with immediate reconstruction so I had an implant. A month after surgery I began ibrance and Letrozole. Guardant has shown I am resistant to Letrozole (I now have new mets after initial improvement) so just yesterday I switched to Fulvestrant. I wanted surgery because I just wanted that tumour out of my body. But I don't know that it will make much difference in the whole scheme of things.
If anyone else has my experience of resistance to Letrozole I'd be hugely interested to know what happened next.... x
Hi Archiedog. I’m relatively new to this site and I’ve already learned a lot from LynnFish. Flower fairies and many more. You’ve had some insightful responses. At 59 I had a double mastectomy with expanders inserted. I would say that the surgery was something I can still recall vividly, especially waking up from gge anaesthetic. I had a job to do which probably helped and we Scots are tough so I was back to working part time from home quite quickly. I’m now 71 and would be more inclined to think of my grandmother’s advice who said “never let them cut you”. I thought I was done with cancer until I was diagnosed in January 2017 with MBC to the bones. Last pet in August saw a spot on T3 and T4 and a nodule in lungs so I might be on ibrance soon. I think Lynn’s post on exercise hit the Mark though I’m only power walking a mile with You tube “walk a happy mile”. I wouldn’t presume to advise but surgery takes a lot out of you! Good luck with your journey.
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