I was diagnosed stage 4 mets to bone on jan 2020 . Been doing really good since .I am on ibrance /letrozol and tolerating it well .
My last scan in feb was NED so my Onc said that its time to see the breast surgeon since he knows that surgery to remove the lump in my breast was always on my mind .I went to see her 2/23 and she pretty much said that so much information is coming out woman living for years with stage 4 so this is kind of all new to them and she will research and get back to me but as of now she suggested for me to not have surgery till we have to . My body kind of accepted my lump and why fix something that's not broken . I went home and kind of put my mind at ease not to have surgery and to move forward .
Last night she calls me and said that she wants to move forward with surgery . Talked to my Onc doc and he agreed .Will present my case at tumor board on Friday and call me with the decision . I don't know how to feel about it now . I don't want to go thru all that testing again ( kind of afraid they will find something ) have to go offf Ibrance and have to use up all my vacation . I know i sound like a cry baby but really i am struggling here to wrap my brain around all this information . Anybody else face this decision ?
Thanks Anita
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Anitafazz
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Hi- I’m going through exactly the same thing. Thought surgery was out— now team wants to be more aggressive with surgery and radiation. Drs think this surgery and radiation may give me a break from Ibrance and more time without a progression of disease.
Psychologically it will feel good to have the remaining tumor out of my body— I’ll have a mastectomy on left breast.
I am lucky I am retired, because work and sick leave would certainly be hard to balance.
I’m having surgery next Thursday, the 11th. No reconstruction .
Try to take decisions one step at a time and do what is best for you. I hope your docs are helpful and communicate all the options for your case. Let me know if I can help in any way.
Thank you Cindy . I did not even get into the "more time without progression" conversation yet . Im glad to hear thou that its on the table .I was told that i will have a lumpectomy and possibly radiation. I guess i will get my note pad out and start writing down all my questions ones i get that call . Just really confused . Good luck on the 11th and please keep me updated on how you feeling .
I have been living with my stage 4 cancer for 5 years and have never had the lump removed. I do not work. I took long term disability at work and was approved for disability but did have to pay a lot for insurance until Medicare kicked in. I am so glad I had no surgery.
Can you feel your lump after all that time ? Feeling it and seeing my dimple is a constant reminder i guess that i have cancer . I feel great work full time and most of the time live my life like nothing ever happened . I will have a lot of questions . Will it prolong my life or just be phytologically make me feel better . I had a fun summer planned so i hope if i get surgery i wont take long to recover . My head is going to explode
Hi Eval - I have been trying to find help regrading medicare and what it will cover. Does Medicare cover your Ibrance 100% ? Any guidance in the Medicare area is so welcomed. Thank you
No Medicare does cover Ibrance. I have been on Ibrance since November. I have Medicare, blue cross and a drug plan. I paid $2543.00 for my copayment in January and $936 in February. You can apply for financial help thru your Onc center and thru Pfizer. I did and was told we make too much money. I don’t mean to alarm you, just wanted to inform you on Medicare. Best of luck
I also have bc in both breast but was told by onc and surgeon that there would be no surgery. They did not recommend it. However I can tell that the lump in my left breast has shrunk and the one in my right was in the duct so I cant tell but that breast seems to be getting back to being fuller as it was before the bc. My drs both agreed that its major surgery and my immune wasnt strong enough so I trust God he knows what's best however that's where each individual has to find their own peace in their decisions. It's up to each individual not the Drs. Prayers going up! (I am on Letrozole, 75mg of Ibrance and xgeva shots). Last scans were stable in the bones, organs looked good and cancer tumor markers down drastically! Praise God!
I'm just gonna throw one of my oddball theories out there...I feel like every time you are subjected to anesthesia/surgery you are weakening yourself overall. I have no scientific evidence that's just how I feel..I have already had a thyroid-ectemy and surgery to remove a malignant melanoma from my leg so I don't feel I want anymore surgeries. My doc says removing my tumor is not necessary but he would move the option forward at my request so I said I was fine as is.
Stage 4 metastatic breast cancer can pop up in other parts of the body at any time. Breast surgery to remove a mass is not going to cure it. If you are stable and doing well on the Ibrance & letrozole why not stay with that until it no longer works for you?
Personally, when I had a tumour all those years ago, I wanted it out and so did the surgeon. I have had numerous ops, hysterectomy and other gyno op, appendectomy, reconstruction. I have bounced back every time. I think your mind is most important, attitude and determination. But in the end you need to get your head around it and make a decision you are happy with. I know my cancer returned many years later, but it had already moved into the lymph nodes when I had the original surgery and I had 26 cancer free years. I wouldn't want to risk more of it migrating.
I like the bit about living many years with MBC, I'm 71 and would love to have another 26 years......!
Your story sound sort of like mine only I was diagnosed a year before. They were planning surgery for me too until they found the met to bone. Then they said since it is already metastizicing there would be no good in doing surgery. But part of mine might also be because I have severe COPD too and would likely not survive a surgery anyway. Don't know if this helps.
First let me say that I'm impressed that you are still working 14 months after getting the MBC diagnosis! I've not been in your position. When I was diagnosed with denovo MBC with bone mets only, the protocols were likely alot different than they are now. That was in March 2004, and once the bone mets were found, mastectomy was completely off the table. I did have a lumpectomy (my doctors referred to it as a partial mastectomy). I've never had radiation and it has never been suggested. Letrozole was still fairly new then, at least that was the impression I got, and I got nearly five years from it. I also was on Zometa, for my bones. I have done exceptionally well and have heard of women living twenty and even 30 years with bone mets, but there is alot of variability in how long we manage to live with this lousy rotten disease. One decision I have made is that I am ever told I should have a mastectomy, I will push hard for a double and will not even consider reconstruction. Having just one breast can have a big impact on our balance, and I already have balance issues unrelated to cancer. And reconstruction can make detecting cancer growth in the chest.... so for me, it seems a no brainer. It probably makes a difference that I am now in my 70's. One suggestion I always make to others with cancer is seeing an oncologist who specializes in breast cancer, in our cases. The best places to do that, in the US, are Comprehensive Cancer Centers. That's a designation awarded by the National Cancer Institute and requires that a cancer center meet very high standards. I have to travel over 100 miles each way to do that, but it has been worth it for me as it has been very reassuring.
Hi PBJ, I was dx’d in March 2004 too! Then 16 years later my MBC dx’d which was 6 months ago... but I had sore aching bones long before that snd never thought it was cancer... just wondering if the zometa helped you with pain? How have you managed pain 16 years in? I had hoped that the Ibrance etc would make the pain go away... Most ladies here don’t talk about pain much so I wonder about it a lot... has you pain gotten worse over the years snd you just keep finding new drug regimens? Have you been on Ibrance?
I love your photo! I'm a dog person, too, actually a pet person! My husband and I joke that the really important things to agree about in marriage are having pets and the termperature of the bedroom! LOL No compromising there! Oh, and my mother and one of my very dear friends were both Bettys! Now about cancer--I don't think I have ever had cancer related pain in my bones. How crazy does that sound? I do have discomfort to mild pain in my left ankle and wrist, but I have injured them and have traumatic arthritis in them. When I was diagnosed, bone mets were found in several vertebrae (mostly lumbar), two spots on the left side of the pelvis, a couple on the left scapula and possibly one on a rib. I have preexisting spinal stenosis and have had to have two back surgeries since the cancer diagnosis, but not because of it. That surgery was in the lumbar area where there are mets and the mets made the surgery more complex but didn't seem to have any other impact. I have been on one of the milder Rx pain meds for a couple of years for pain in that area. My sciatic nerve was damaged by the stenosis and the feeling in my legs and feet is compromised. You ask about treatment. RE bone mets, I was on Zometa for a few years and when Xgeva first was FDA approved, I was switched to it. Most of the time I have gotten those meds every 3, 4 or 6 months. I was allergic to Zometa so had to have alot of extra stuff done so I could tolerate it: half dose, pre-treatment with IV Benedryl and cortisone, extra fluids, extra infusion time. The first several months that I was on it, I was very tired the day of and day after infusions but that eased over time. I've not felt that with Xgeva. But all that is so individual......... My first bc treatment was Femara and I got almost five years from that. Then Faslodex. I got over 9 years from that and have known several women who have gotten more time from it than from initial Femara (Letrozole). In 2016, Ibrance was added to the Faslodex for a few cycles but it damaged my lungs, something called Interstitial Lung Disease, which has gotten worse not better over time. I see a pulmonologist every six months and have two Rx puffers to treat that and reduce getting out of breath easily. It's worst when the weather is humid. I have been on Exemestane for a bit over 3 years now and it may be coming to an end of effectiveness. I had a CT on Wed. of this week and see my onc next week. We've not b een in a hurry to change meds as I have done so welll for so long and the cancer just doesn't seem very fast growing/aggressive. But again, everything is so individual.
For me, fatigue has been the worst symptom/side effect. With the pandemic, the only times I leave the house are for medical appts and to go to the grocery store. Days that I go to the store, I often have no energy for much else at all!
My family may carry a gene that helps us live with cancer. Not prevent cancer, but keep it at bay once it shows up. My paternal grandmother had endometrial cancer in the 1950s when she was in her 70's and lived to be 102. Two first cousins on that side of my family and had colon cancer. One had stage IV colon cancer and was cured! So ,my onc and the generics person I talked with suspect some genetic something........ wish I could clone it and share it! In terms of coping, I have alot of things going for me. Great family support. Plus I was a therapist for 20 years and have alot of inner wisdom about coping with stuff! Not the first time I've had to deal with very stressful stuff! Plus I left being a therapist to go to seminary and am an Episcopal priest and have a very strong sense of faith and belief that this isn't all...... that there is something after death that is so grand and wonderful that we human beings really just cannot comprehend it fully. So I am not afraid of dying or of being dead. I have had the privilege of being with quite a number of people at the moments of their deaths, including several who died of cancer. What I have seen has been reassuring almost always. And I use my sense of humor alot! In many ways this living with cancer can be pretty ridiculous and I make the most of opportunities to laugh and share silliness with my family. One way I look at it is that we generally don't know when exactly we will die and cancer doesn't really change that, tho it does give us a hint about what will cause us to die. Of course I have had awful moments, especially during the first couple of years. I don't want to leave my family, especially my husband. a guy who really needs a wife! lol And I hope that one of us will outlive all our current pets! Our kids have housefuls of dogs and cats and will be stretched alot to find homes for ours! We have one dog and one cat who are young....... the others are all getting up there....... Sorry I've gone on and on...... I hope you will do well and live for many years yet with good quality of life!
Loved your post. I feel the same way about my pets. And I also truly believe the Lord is keeping me on Earth because my needy young adult daughters and my husband can’t function without me. LOL.
Got a phone call form my breast surgeon last night . I was discussed at tumor board and the vote was for surgery to be back on the table with radiation . She explained the process to me like extra testing ,time to recoup till i can get radiation etc . All i was really interested in was is this going to help extend my life . Nobody knows what the future holds but the vote was towards yes it will help me live longer but of course more studies are needed . A lot of research is going on because woman live years with stage 4 breast cancer now compared to 10 years ago . She was very positive about all this .
After long thought and discussion with her i decided to wait till fall to have surgery . I planned my summer out with lots of camping trips and i really don't feel like being laid up for most of the summer . I feel good and i want to enjoy the sun while i feel 100% . Since im doing good andthe Ibrance is working for me she didn't see it necessary to do this right now . Thanks for all your opinions and thoughts . I appreciated every single one of them and im glad i have you guys .
I’m somewhat similar to what you are doing. I have been treated very aggressively. I was diagnosed de novo with Mets to my lungs Nov 2018. Discovered I had her2- in my breast but her2+ in my lungs. Was treated with taxotere herceptin perjeta for 8 rounds which cleared one lung and my breast and left only like 4 spots in left lung. Continued on herceptin and perjeta and more shrinkage in left lung. However the breast tumors started growing back. I had a mastectomy. That was her2- and I was on the her2+ meds so I rationalized that I can only take one type of meds for this so I wanted that gone. So then because I was considered oligametastatic they suggested SBRT on the biggest spot in my lung. That worked. Now I’ve had 2 lymph nodes removed that showed up under my arm where my beast was removed. My last scan now shows NED. I’m so thankful. My onc wants me to do radiation to that area under my arm for prevention purposes so I am.
I’m continuing the herceptin perjeta every 3 weeks for the lung Mets to keep that from coming back. It has basically no side effects for me. It is a personal decision but I’m thankful for the aggressive treatment and for my “all clear” status. My onc said if we have to we will keep spot treating. I’m good with that.
I was diagnosed de novo with 9 bone mets in May 2020. I was put on ibrance, anastrozole, xgeva, zoladex.
In January 2021, my mets' bone suvmax were around 1,5 which means the mets are stable. Not NED but more like NEAD - no evidence of active disease in bones.
Breast tumor had decreased but was still active - suvmax 5,5 - originally 11. Tumor around 1,7 cm.
The oncologist suggested I had it removed - partial mastectomy.
I had the operation last week.
It really went well. No pain at all. I was out of hospital in the afternoon. My breast looks better than before. Just a small scare under the nipple.
This is such a difficult decision for me . My Doc's want to do 3 weeks of radiation after surgery and i was not prepared for that . Had long discussion with surgeon and decided to wait till fall since my tumor in breast is not active .
I will never know if i made the right decision but i had a very stressful summer last year and was really looking forward to do what i missed out on last summer . She was ok with that and assured me no harm will be done with waiting . Its so scary to not know if you made a mistake .
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