Hi all,
Not posted for a long time but hoping for some experiences/comments. Had 11 cycles of ibrance and responded very well. Surgeon is now prepared to remove nodes under arm and right breast. Oncologist has advised will need to be off ibrance for just over my week off and can resume bloods permitting, a period after surgery.
Has anybody any knowledge/ experience of this scenario , all comments appreciated
Helen
Hey there, I don’t know how old you are or your exact situation but my oncologist said that surgery wasn’t warranted. He said if I wanted it he would set it up but that it wouldn’t be for any reason other than my peace of mind. Curious to hear what others say.
That was I thought I heard too in general. It’s not so common to do this with metastatic disease? Of course it depends on individual circumstances but I personally would be wary of getting lymph nodes (especially if it’s many) removed and risking getting lymphedema. That would be my personal quality of life choice. BUT, perhaps there is a strong argument why the surgery should go ahead? Has there been/is there a need for a second opinion in this case? Archiedog
Helen, If you are asking about an Ibrance break for surgery, I did just that when I had a partial thyroidectomy, and all was well.
Holding good thoughts for you...
Helen, I’m somewhat baffled for a few reasons:
1. Why is surgeon recommending that you go through unnecessary surgery (ie the surgery will not cure your MBC)?
2. If you DO have any cancer remaining in your breast and/or lymph nodes, future scans will provide evidence of your response to treatment by showing that the tumors are shrinking or have disappeared.
3. You are required to stop taking your meds temporarily—treatment that has proven to be very successful. Why?
I guess I’d ask these questions of your oncologist prior to proceeding with surgery.
God bless you, Helen. 💗🙏🏻
Linda
Hello Archiedog
My story was exactly the same as yours. I had 10 cycles of 125 mg of Ibrance and anastrozole. The doctor told me to be off of Ibrance for one month before my surgery. I had 18 lymph nodes removed from under my right arm, and breast conserving surgery on my right breast last Dec. Only the lymph node that had been biopsied had cancer, the other 17 did not. The tumor that was removed from my breast shrank from about 5 cm to 2.5 cm with Ibrance and anastrozole. In mid Feb. I had 19 radiation treatments. After surgery my oncologist put me on 150 mg of Verzenio and had me continue with the anastrozole as well. I will have a mammogram on mid August, and hopefully everything is going well.
I hope this helps, and I wish you well!
Best,
Colleen
Hi Helen:
I had surgery for breast plus lymph nodes removed because the tumour had grown and broke through the skin. The surgery was very successful. I had just started Ibrance and was told to pause it 3 weeks before surgery because it lowered my immune system which wouldn't be good for surgery. I resumed Ibrance a week after the surgery. That was in January 2020 and I have had some slight progression in my left lung but , my secondary site, (left hip) has remained stable since diagnosis in 2013. Due for a bone scan in May. I have a very indolent cancer.
Even though I knew the surgery wouldn't cure me, I was happy to have the primary cancer source removed and because of the tumour breaking through the skin I didn't have a choice.
Rather an elongated answer to your question!
No matter what anyone says it is always good to get a second opinion when in doubt. Wishing you all the best,
Cheers, June S.
I'm a long timer, 17 years living with MBC, and in treatment since diagosed with denovo bone mets. Ibrance and alot of the newer targeted therapies were not around when I was first diagnosed and my understanding of them is that they have been shown in trials to prolong the length of time the older standard treatments work. Going off Ibrance for a relatively short period of time, while presumably still taking whatever hormonal treatment you are on, seems like no big deal to me. Unless you have a rip roaring aggressive cancer, it doesn't seem like being off Ibrance for a few weeks is going to make much difference for you in the long run, but that is something to talk with your onc about. I am always surprised when someone here says they are on Ibrance, or Affinitor or another of the targeted treatments, without also mentioning the older standard med they are on. But again, something to talk with your onc about. When I was diagnosed, with mets from the get go in 2004, those of us diagnosed at stage IV were generally not advised to hav e a mastectomy as it was not associated with longer survival. I had a lumpectomy and have been fine with that.
But that is me. I'd suggest making a list of your questions and having a long talk with your onc about your options. THe pros and cons of each option. I hope you will find peace of mind with whatever you decide to do.
Hi Helen,I have been on Ibrance, Anastrozole and Xgeva since June 2020 after being diagnosed MBC with 9 bone mets.
The onc had a clip put on my breast tumor as she had planned to have it removed later when the mets had stabilized.
I read, in between, that removing the primary tumor can be beneficial in some cases such as in bone-only or oligo-metastatic MBC.
Research is not really clear on why or how it helps. The idea is to reduce tumor burden. Maybe this can help treatments fight the disease more efficiently?
Recent surveys have been released on the benefits of removing primary tumor in de novo MBC.
Last pet scan in January 2021 showed no more active bone mets, but breast tumor was still active - 5,5 suvmax. Therefore the onc suggested I had the breast tumor removed.
I had my tumor removed beginning of March. It had shrunk from 2,3 to 1,5 cm and had gone from grade 2 to grade 1.
I continued taking Ibrance. No one ever suggested my stopping it.
I am currently having radiotherapy on the breast - 20 sessions are planned. I am still on Ibrance.
I read that statistically it's better to have the primary removed.
But, only time will say if in my case ig was a good idea.
Neithertheless, the surgery was not painful. I came out on the same day. As the tumor was small, my breast looks pretty much the same as before. Just a bit deformed when I put my arms up. I had that before anyway. That how I suspected having breast cancer in the first place.
I am really happy with having the tumor removed. It all went really well. I don't no why but it makes me feel much better.
I also had the opportunity of having my covid vaccine done at the clinic. That also makes me feel better.
Take care,
Lucie xxx
Lucie,
I know what you mean about feeling better with the tumor removed. I don’t know why, but I thought I was going to have the tumor removed immediately. I was surprised to have 10 cycles of Ibrance before it was finally taken out! I was under the impression that it was urgent to “get the cancer out of the body,” and very surprised when it took as long as it did to have the surgery. I did not understand the concept of hormone therapy to possibly shrink the cancerous tumor then.
I was SO glad when I was rid of the cancerous tumor!
Best,
Colleen
Thank you so much for all your replies ladies, they have really helped . My diagnosis was de novo and hadn’t spread to any organs couple of chest nodes lit up on first pet scan , but the suspicious small areas on my spine seen on ctscan didn’t light up on pet scan . I’m leaning towards surgery cut the parasite out and move on,
I think that’s a fair choice but I would check their plans for how many lymph nodes they plan to remove. Or how they chose how many to remove. Some surgeons seem hell bent on taking out a lot (which I’d say is anything over 6) and the more removed really increases risk of lymphedema. I’ve seen people really suffer from this condition when there was no need to remove so many lymph nodes, which is the only reason I’m bringing this up . You’ll be fine with the hold on your iBrance. Wishing you smooth sailing with the surgery!
Yes I have had to go off Ibrance a few times for surgical procedures. I was very anxious. My oncologist tried to reassure me by saying Laetrazole was covering me. So far so good. I hope your surgery goes well.
Hi Helen— I’m in the middle of the same thing. I had surgery in March— went off Ibrance Feb 25. Waiting now for radiation treatments—3-5. Then going back on Ibrance at the end of May. I’m on Exemestene and my Onc said being off Ibrance while continuing exemestane would be fine for a few months.
As for surgery— my team said the few Mets I had— and positive response with Ibrance prompted them to consider removing the large tumor in my breast. I decided having the tumor gone— would be helpful for me psychologically and Inc team thought it could extend my life.
I know besides the pain and discomfort it can be a lot of work to maintain the health of the arm 
Ibrance and letrazole 
Ibrance
Ibrance
Ibrance 
