Fourth recurrence - when to stop

Wow, that sucks. Perhaps your MO can get your insurance company to pay for AI + Ibrance, since your cancer seems to be resistant to hormone therapy alone.

I haven't had recurrence, but I didn't have a great response to chemo and am at a pretty high risk of recurrence. For me, if my recurrence is soon, I won't do chemo again, and perhaps not any treatment. In my mind, I already had a ton of treatment and if at the end of it I still have cancer, then treatment has only made my life worse so why do more? If recurrence happens 10 or 20 years down the road, then maybe chemo did knock it back and will work again, at least temporarily. It's just my logic. Best of luck with all of this.

Hello there. I am sure that this is very upsetting for you. But I would urge you to find out all of your options before throwing in the towel. I myself was originally diagnosed in 2003, first recurrence in 2006 (single site), melanoma also in 2006 (easily treated by Mohs surgery), and now a recurrence to my liver in 2019. Things are constantly changing in the field of breast cancer. I would urge you to talk to your docs, perhaps have a biopsy to send for a genomic report (like Foundation One), and see what that tells your docs about what treatment could actually be more effective for you.

Good luck! This is definitely a journey.

Uuugh. I am sorry you're dealing with this again. I'd agree about asking for ibrance with the antihormonal. Keep us posted no what they decide. How completely frustrating to have this keep recurring.

Look into the care oncology clinic if you go to UK. They are repurposing other drugs in combination to fight BC.

Hi Mccathy, I haven't been here in some years and am back now with a recurrence myself. I totally understand your line of thinking. However, I keep thinking about something my DH said. I was complaining about my situation, which is complicated by lung-heart issues that recently arose, and he said, "They are making discoveries every day and if you can have a reasonable quality of life and stay alive, they might come up with something that will work for your situation in the very near future." Unlike some of his comments, this one made good sense the longer I thought about it.

Secondly,as BevJen stated, if you have genetic testing available to you, your docs might be able to tell you what is likely to work. No sense in suffering side effects if the treatment isn't going to do much or any good. When I was first diagnosed (ER+, PR+, HER2-) my oncologist at Mayo clinic (very good research oncologist) told me that according to my genetic profile there was no use in trying chemo, as this type of cancer laughed at chemo and would only respond to hormonal treatment. I tried that-but I was unable to stay on it due to side-effects.

So, here I am back again after 7 years of relative good health. Recent studies indicate taking Tamox for five years may only prevent recurrence for five-ten years. That indicates that even if I stuck it out, I may still have this recurrence. That being said, I would be willing to at least try out something that was shown to work on my type of cancer this time as well.

You didn't mention if this new issue is on the same (left) side or on the right side. If it is on the right side, then maybe this will be your last encounter after the surgery is complete (fingers crossed). Hopefully it hasn't spread anywhere else. Sending hugs and good thoughts your way-and remember, no matter what, treatment is a very personal decision and you are the only one who can decide what is right for you.

Hoping your plan is in place soon. They have some molecular testing of tumors here (Foundation One is one...there are others). Hopefuly you find somethign specific to target your tumor.

Congrats on your clean scan!

So glad the scan was clear!

Cathy,

Since you have had your surgery, I am guessing that you cannot do one of the tumor testings, which is what I had (Foundation One). Foundation One also has a liquid biopsy, I believe. Another one I have seen on these boards is Guardant, which has a liquid biopsy test. I think there are others, but hopefully others with more knowledge will weigh in. You can google these companies and they describe the test. The Foundation One report that I received was very extensive and explained the genomic characteristics of my new tumor. It also indicated which medications might prove helpful with my particular tumor.

Good luck!

Cathy, samples of my tumor were ‘banked’ automatically (I believe for 7 years), and I believe that’s fairly common, so the fact that you’ve had your surgery may not necessarily limit the genomic tests available to you. Talking with you oncology team about this a.s.a.p. would be my first priority if I were in your shoes. Best of luck to you as you slog your way through this.

2020-So sorry for all you’re dealing with. I hope you will be feeling much better soon and will see encouraging results from your new treatment approach, and especially that the Ribociclib is approved quickly

Mine was PR- when it returned. My MO thinks that the Tamoxifen worked against the PR+ cells, but not the PR- ones (I was 80% PR+ the first time) and the PR- ones eventually grew into tumors. We don't know that for sure, but I'd been thinking the same thing, so we both share the same theory behind it. The other is that sometimes within a single tumor, the make up of it can be different, so sometimes it depends on what area they sample. Hoping you have a plan soon.

Lujos, welcome to our Community and thank you for sharing your experience and support. If you need help around the boards at all feel free to send us a private message. We're here for you!

Sincerely,

The Mods

So how do you keep your spirits up or confidence that treatment will work? I am close, but not there yet, to throwing in the towel. My energy is good, and I still enjoy the outdoors and walking my dog. The DR has not used the word recurrence or metastatic, she thinks each cancer is a "new one". ( 51 yrs at first Dx). 2009, Left breast (dense lumpy, right normal), BC. Lumpectomy, radiation, tamoxifen for 5 years. 2016 Left BC (new DR/clinic). Chemotherapy (did cold capping), bi-lateral, started anastrozole but SEs, so switched to Tamoxifen. 2 nodes removed left for both surgeries, negative. 2019 noticed swelling in R-arm. Lymphatic therapist contacted DR and said DR needed to see me since the lymphadema was very unusual, contralateral. Since then, CT scans, ultrasounds, biopsy, PET scan, genetic profile. Biopsy shows BC. Genetic test shows no known markers for some 20 markers. Pet Scan shows no mestasis. Anastrozole and Ibrance Rxed in hopes it will shrink tumor ahead of surgery. Also contacting research clinic to see if they have other treatments available.

mccarthyg: perhaps with the mastectomy, this will be all the treatment you need (plus, probably, radiation and then maybe not). I am hoping your other breast stays silent now too.