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Update on hormone appropriateness for me

Update on hormone appropriateness for me

Posted by KerriKerri on May 20, 2020 5:44 pm

Spoke with my ‘hormone’ doctor. The test came back from California
Chemo not recommended.
Meta protein yadda yadda on scale 1-100 is 11, low risk
5 ys of hormones= 3% risk of cancer return somewhere in body in next 10 years
no hormones = 1o% risk of cancer return somewhere in body in next 10 years
Send me the sheet of test results, I said.
We will talk again in 2 weeks
In 10 years I will be almost 85
The odds are in my favour.

Thoughts welcome.


Re: Update on hormone appropriateness for me

Posted by Kims1961 on May 21, 2020 12:29 pm

KerriKerri‍ Well....this is really good news!  No chemo - yay!!!  I guess your question is whether to do hormone therapy or not.

I"m glad you asked for a copy of the results.  I found it helpful to read before making any decisions- in case i had any additional questions for your doctor.

It's definitely an individual decision and since you have some time before you see your doctor again, it gives you some "space" to collect your thoughts around this.

Thank you ashcon‍ for this decision aid tool.  I've used it for making some of my decisions.


I'm so happy that the results were so positive for you!  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Update on hormone appropriateness for me

Posted by KerriKerri on May 21, 2020 1:36 pm

Thank you, Kirns1961 This is pretty much what I am doing so it's nice to have such a well organized  check list. I think it's a bit frustrating for the hormone doctor but I want to be sure I go in with eyes wide open.  Besides, he really doesn't want me storming his office saying something like, "Why wasn't I warned"...fill in the blank.

I also impacts my considerations for radiation, yes or no.

Re: Update on hormone appropriateness for me

Posted by happyhiker1 on May 21, 2020 3:43 pm

Hi KerriKerri,
I'm in about the same situation as you wondering about the hormone blocker, and am just finishing up radiation (2 more sessions, 15 total); I discussed the hormone blocker with my
rad-oncologist this week. I had Oncotype result of '10'.  She said after rad, I was about 95% protected, and the pill would add about 3% more.  (so I'm curious about the diff percentages you were quoted; maybe from the Oncotype test itself?). She says she sees women a couple of yrs after being on the meds, with important side effects, and she seemed to suggest they could safely omit the meds (but some were too anxious to do so). She thought my low Oncotype was a good sign I would be safe, but we agreed that my more rigid surgeon-oncologist would probably promote taking it. It will be impossible for me to get any more info from the latter, as already pre-Covid, she told me she was too busy to see me for 6 months.... So I will have to make this decision on my own.  I never received a doc with the Oncotype results, I should have thought to ask. I did find a scientific study done with a diff genetic test (Mammaprint) which found those with 'ultralow' results were basically fine even without the meds 20 yrs later (must have been a retrospective study...).  I'll be curious to know what others and you discover further.  In any case, I will at least start the meds, but not sure I will endure bad side effects.

Re: Update on hormone appropriateness for me

Posted by KerriKerri on May 22, 2020 9:28 am

I have not made a final decision on radiation either but I am leaning strongly to 'no' which is not going to make either oncologist too happy.  

Still pondering.

Re: Update on hormone appropriateness for me

Posted by TT53 on May 22, 2020 11:53 am

KerriKerri‍ I was faced with the same decision as you regarding hormone therapy.  I had two tumors 3.0 mm and 3.5 mm and I opted for a mastectomy after two unsuccceful
lumpectomies even though I was told it was an overkill.  I was prescribed the hormone therapy while I was still going thru lumpectomies, prior to my mastectomy.  Because of the side effects of letrozole, I also had a bone density scan to determine my bone health.  Letrozole depletes calcium out of your bones.  The test determined that I have osteoporosis in my lower back.  Since my oncologist went on maternity leave and I was kind of left in limbo for a while,  I had contacted the cancer center and asked for a review of my situation with the new oncologist.  She was very good and went over all of my results and she told me that the benefit of not doing hormonal therapy raises my cancer reoccurence by 1%.    She also went over the odds of switching to Tamoxifen and they were still the same.  So I chose to stop the treatment.  I had quite a few side effect from letrozole,  so I was glad to be able to stop.  At first I did have doubts whether I am doing the right thing, but I have been off of it now for 4 months and I am OK with my decision.   Since I had the mastectomy, I did not have to do radiation or chemo.  My lymph nodes were clear as well, so I consider myself extremely lucky.
Good luck with your decision.

Re: Update on hormone appropriateness for me

Posted by KerriKerri on May 22, 2020 1:00 pm

Thank you; food for thought.

Re: Update on hormone appropriateness for me

Posted by AngelaC on May 23, 2020 1:42 pm

KerriKerri‍    All treatments are such an individual choice, I believe it comes down To what you can handle both mentally and physically.    I had a small tumor, stage 1 so I decided to do double mastectomy because I suffer from anxiety and overthinking at the best of times and didn’t want to worry what if and deal with yearly mammograms etc. Because I did the mastectomy, I didn’t need chemo or radiation.   And then my oncologist gave me stats of doing hormone therapy vs nothing.  I am 57 and doing the hormone therapy only increased survival rates for 1% over 5 years and 3% over 10.  So given the potential side effects of the drugs, and that I Already suffer from such bad hot flashes going off HRT,  fibromyalgia and arthritis, It was such a no brainer for me to not do the therapy.   And I have had no anxiety over that decision.  

Re: Update on hormone appropriateness for me

Posted by KerriKerri on May 23, 2020 1:56 pm

I so sympathize with the hot flashes. I look at pictures of myself during that time and I always look like I am teething; soaked from the chin down to bustline and further. *shudder*. Thank you for your input.

Re: Update on hormone appropriateness for me

Posted by Barney on May 24, 2020 10:46 am

Barney here..  Your notes correspond to my experiences with hormone therapy for advanced PC. When we get up in years (and I am older than you) we perhaps seek quality of life rather than quantity.  Hormone therapy gives us that, I think. It tends to "starve" the cancer by depriving it of testosterone. As I understand it there are different ways hormone therapy does that. In analog therapy (e.g. Lupron) the treatment overstimulates the pituitary so that it "wears out" the sources of testosterone, and eventually shuts them down. This what is meant by medical castration. Another kind of hormone is an "anti androgen"  (e.g. bicalutamide) which prevents the cancer cells from being affected by the spike in testosterone caused by an analog hormone. Another hormone type drug is abiraterone (Zytiga).This works on almost all sources of testosterone, including any other than the testes. It is useful in advanced PC where there is involvement in other organs, including bone.  None of these are in the "chemo category", so there are fewer side effects.  While they do not destroy cancer cells directly they hold them in check indefinitely. There is a possibility of bone loss with some of these drugs, so doctors usually recommend vitamin D and calcium supplements.
That works for me, as I trust that it works for you