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Makes sense! I wish there were not so many insurance hoops to jump through!
@A MyBCTeam Member.....For me my 2nd round of breast cancer showed up 7.5 years after the first bout. My ongologist calls it a recurrence even though the new cancer is a totally different kind of cancer from the 1st one. She did finally agree with me that it is a new and totally different kind of cancer, but she still keeps it in my medical records as a recurrence because she says it's easier to get insurance approvals for everything that way.
@A MyBCTeam Member Please follow Sue's advice- the stats the doctors usually quote us is for 5 year survival. I am HER2+, my highest risk was the first two years, then it dropped lower at the 5 year mark. HOWEVER, that stat is not fixed! Apparently, according to some research, the risk starts rising back up at 10 years. Remember out oncologists only follow us for 5 years, and cancer after that they do not consider a "recurrence", but a second diagnosis of the same type of cancer.
Thank you for all that info. My cancer was removed, clear margins and nodes. It was small and hr+. Because my oncotype score is 28, my chance of reoccurrence is 17% with hormone therapy alone. My oncologist wants me to do chemo to bring that down to 12%. But I already have neuropathy issues which makes me even more likely to experience chemo neuropathy. I don’t feel like the risk of destroying what active years (i’m 64) I have left for a 5% chance of reoccurrence is worth the risks. I am so conflicted. This is the hardest decision I have ever had to make. If I needed chemo to save my life, of course I would do that. But I have an 83% chance it will not return.
The first time I had chemo there was no mention by any doctors or nurses of neuropathy prevention. I ended up with neuropathy in my toes, feet, fingers, and hands. Over the course of the first year post chemo the neuropathy lessened some, but it never came close to going away. The second time I had chemo I was told to use the frozen mittens and socks. Unfortunately they were not a viable option for me because I live 3 hours away from where I get treatment and they don't stay frozen for very long when put in a cooler with ice. The hospital would not put them in their freezer either because it is used for food products and the frozen socks and mittens were deemed unsanitary. I also learned from others that if you do use the socks and mittens you should have more than one set because they will not remain cold for a long enough time period to get you through an entire chemo session. I ended up returning the ones I purchased to Amazon. Instead I tried to use gallon size zip lock bags that I filled with ice. It did not help. My neuropathy got progressively worse after each chemo session. I could feel the difference within a few days after each new session. I finished chemo last July and it's been 7 months now and I haven't had any improvement with the neuropathy this time around. I am fortunate that the neuropathy I do have is only numbness and does not cause me any pain. I do have problems with balance sometimes from the toe/foot neuropathy and have dexterity and fine motor skill issues with the numb finger tips. I've had 5 different kinds of chemo meds, all of which contributed to the neuropathy. The first time I had Carboplatin and Paclitaxel. The second time I had Doxorubicin (red devil), and Cyclophosphamide for the first 4 treatments followed by Docetaxel for another 4 treatments. I was told by my former oncologist that the Doxorubicin and Cyclophosphamide shouldn't make my pre-existing neuropathy worse, but he was wrong and that's one of the many reasons he is my former oncologist. I have since learned from research that the socks and mittens probably aren't sufficient to partially or completely prevent neuropathy because they do not get or remain cold enough. There is some sort of commercial machine that does get and stay cold enough to possibly lessen the odds and/or severity of neuropathy, but most chemo centers do not have it and those that do tend to charge quite a bit to use it.
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