Stage 4 With Breasts

9-12, your primary seems weird. Please follow your instincts. No way I’d stick with that one.

I used to get questioned, too, about “only” taking a pill for mbc. You have to develop a tough skin and learn not to give a xxxx what they think like Chicagoan says.

Look, after 5 years living with mbc, you are beating the odds. Tell people that. I say things like, “Most women with mbc are dead within 5 years, and I’m still here. I’m having an exceptional response to treatment, and that tells me my onc and I are making the right treatment choices.”

The “dead within 5 years” is a bit dramatic and not 100% accurate, but I’m going for shock value. If someone doesn’t understand treament for mbc, they don’t know the statistics, either, so I frame them the way I want. Yes,I have said these things to people and it leaves them not knowing what to say in return. Good.

I also had a pretty large tumor at my de novo diagnosis, and the doctor said there's no point doing surgery. I can't say that I was sad about not having to go through major surgery, but sometimes reading some of the newer reports about improved survival with removal of the primary makes me question my MO's choice. I tell myself that a lot of those studies show selection bias, and that they were done before the advent of CDK inhibitors, but I still wonder. Not enough to ask for surgery, mind, especially since the last few scans have shown no metabolic activity in the breast tumor.

I have another scan in a couple of weeks and for some reason this time I'm really worried about what it will show. I don't exactly have pain in the area, but sort of an "awareness" of that breast being there, as opposed to the innocent one which provides no feelings whatsoever. It could of course be some muscle or nerve issue connected to sitting hunched while studying, but worry is the name of the MBC game...

I think if the tumor decided to wake up just in the breast I would push a little against the "no surgery" idea - I'd like to stay on Ibrance/letrozole for as long as possible, and it seems that dealing with local progression locally might be a way to stretch out the systemic treatments.

I'm glad you started this thread, NineTwelve, and seeing how well you've done with an intact primary gives me immeasurable hope. I also agree that you need a new PCP - it's one thing to raise questions, maybe even make suggestions, quite another to torpedo someone's hopes and confidence in their expert treatment team and jump to completely uncalled for conclusions.

Im a newbie still waiting to see what the drugs are going to do, but I hate the way mine looks (inverted nipple) and its like a constant reminder of my failure to take action when I felt that something was wrong, to not look after myself properly. It isn't wildly larger or oddly sized compared to the other side, but I really really wish it (or whatever is left) could come off at some time. I get the arguments both ways (and like Piggy I also wonder about having it removed for longevity sake) but psychologically its a no brainer.

I still have my breasts. I am and was grateful I did not need mastectomy.

Even before I found out I was Stage IV, the treatment plan would have been lumpectomy.

My MO recently mentioned the new data on better MBC survival with surgery, but again, we still only discussed "lumpectomy" which I put in quotes because my tumor is not detectable on scans anymore. I know even that surgery might bring its own problems but I think getting some tumor tissue, if any remaining cancer is in there, will be helpful because it will be tested for mutations which could be helpful if/when I have to go to a new line of treatment.

In the beginning, I just wanted that tumor gone and I was indignant that I was no longer recommended for surgery. But, after it shrunk down to nothing, I was fine with not having the surgery.

Let's face it, mastectomy is an amputation and can come with many complications, both physical and for some people, psychological.

Let me also add, the remark from your PCP seems strange - strange that she doesn't know this is standard of care for Stage IV de novo, notwithstanding any recent findings, no surgery is still standard for most. And, strange that she reacted so vehemently about the care youre getting, it might have been better for her to quietly contact your onc or otherwise get more info about your treatment plan!

I may not exactly fit in here, but I started with no surgery planned, then just a few days ago I had a lumpectomy. Before my denovo diagnosis in January of this year, I was expected to have chemo, then lumpectomy, then radiation. After scans showed liver mets that changed to Ibrance and Letrozole only. My MO said, if there’s a silver lining with my MBC diagnosis, it’s that I won’t have to have surgery or heavy chemo. I kind of liked that, and did feel pleased to still have two whole breasts. I got comfortable on I/L and both sets of scans showed improvement, so I got more comfortable. So I was caught by surprise when the radiologist who read my mammogram in June asked what my surgical plan was, and when I said I didn’t have one, she said I should ask. Well, I did ask in September when I saw my MO again, and she talked about oligometastatic MBC and that there’s a thinking that aggressive treatment may be beneficial after all. So I had a lumpectomy a few days ago, with sentinel node biopsy (which was negative, another surprise). Recent mammos were showing the breast tumor as undetectable but apparently there was still something to remove. I’m expected to have radiation in a January.

I am no expert on medical practices by any means, but I was in for the lumpectomy when I heard the BS and the IR say “curative intent”. No guarantees, like in everything, and I know that. I thought I could offer my experience to the discussion as one who started out with no breast surgery then moved to having surgery. Wishing the best to everyone!

I had a lumpectomy and radiation for stage I. Three years later I had bc tumors in the liver and one in the same breast. The breast tumor was in a different quadrant, so it was not a local recurrence but either a new primary, a missed tumor from three years ago (biopsy sampling error?) or a breast met. My onc believed it was metastatic disease in the breast. I must have asked at three consecutive appointments why we were not doing a mastectomy; had a hard time wrapping my head around no surgery. My onc thought that surgery might promote mets through inflammation, etc. and of course treating the liver was priority and there was no time to lose. We used that breast tumor as the canary in the coal mine, actually feeling it get smaller and softer with each weekly taxol infusion. This really encouraged us as we waited for my three-month scan. Soon this breast tumor could not be seen or felt or imaged. At one point I had some pain and got an ultrasound and breast MRI. There was absolutely no tumor to be seen there. The ultrasound radiologist couldn’t contain himself, and he came into the room to take the wand and see for himself. He said I had made his day. My PET scan was showing NEAD at that time. Since then liver mets have reappeared, but no breast tumor, and I believe the cancer mutated and is no longer the same as when we could use the canary. That’s my story. I am glad I felt I could trust my onc and did not not have to have more breast surgery.

By the way, I have had two different PCPs demonstrate their ignorance of mbc.

NineTwelve, yes it was cool to hear curative intent but in reality I know that's very unlikely to actually happen. I try to remind myself of that, but it's nice to dream. I also have that issue of liver mets. (Had a consultation about future treatment, nothing for now.)

I last saw my pcp to revisit sinus issues. I've been going to her for many years. She is very warm (and big on eye contact) and when I told her about my diagnosis she was quite shocked and almost made me cry too. I had to reassure her that for now I'm doing ok. I find that people close in age to me tend to put themselves in my position and often want to know what my symptoms were (none).

My tumor is against my chest wall as well. People don't seem to understand that they would have to dig out your entire chest wall to get rid of it. It's not as simple as you might think and I wouldn't want to be off ibrance long enough to have reconstruction. Also, there is nothing that guarantees getting rid of the primary site will cure me or even give me more time. I find I have to educate my doctors about breast cancer all the time. I left my full-time job at lunch time for an endoscopy and had some really bad pain afterwards. The physician said "since she has stg 4 breast cancer just send her home with narcotics". I was like, "figure out whats wrong, I'm not a hospice patient". This seems to happen a lot!

I gotta say, I had a look at Frankenboob last night before getting into the shower and something seems to be happening as I can see more nipple and it feels much softer and more like the other side. Most of the lump now looks like its trying to make a break for it off the starboard bow, but its definitely of a changing constitution.

Twenty years ago when I had that reduction they said at about 15 years I would probably need a lift or some light PS to recontour. I had a great surgeon with minimal scarring - last year at this time I had mentioned to Other Half that I wanted to get a PS consultation in 2019 with an aim to slight reduction/lift on both. Boy what a curve ball I got instead!

I do appreciate the information above though, ladies, I hadn't considered it as a coal mine canary but ultimately that makes sense. Its these different angles (and the one that Piggy provided as well about local recurrence challenge to stay on I/L) that you would never see laid out in literature anywhere, but come together in this one place. Food for thought and for oncologist challenge when the time comes.

Mae - that looks like Chad's cousin!

NineTwelve, I'm sorry about your mom's passing, and about the unwanted "counselling" you and your family were subjected to. I wish more people would stop and check before offering spiritual help, especially if it's more elaborate than a quick "I'll pray for you".

I know what you mean about not wanting to look at the tumor - mine was not visible, but was very "touchable", and I find myself avoiding touching that breast. The doctor does exams every 4 months or so, usually in between scans, and I kind of told him that I consider the breast exam to be his domain now, because I don't wanna... Irrational and childish, I know...

https://community.breastcancer.org/forum/8/topics/786652?page=1

Maybe there would be some useful discussion for youon this thread about oligometastatic patients.