Best Of

Hello, all who are here or find this thread! Thank you for adding your stories, information, and experiences to this thread. This is, Pam/livinglifenow, an absurd disease. I am both so matter-of-fact about it and terrified of living with it for the rest of my life I alternately laugh and cry! And I am constantly in awe of all that my fellow humans here have endured and continue to endure in the name of treatment.

Some good news: my first annual mammogram and ultrasound was clear.

Some mediocre news: At 49 I already have osteopenia, as found by a DEXA scan (bone density test) on the same day of my mammogram. Osteopenia is low bone density, and my latest oncologist suspects it is hereditary. Mine is not severe or even considered something to treat if it was my only health issue. Just up my calcium and vitamin D intake. Of note, my mother has been on EVISTA since her early menopause at 40, and this SERM, originally designed to help fight breast cancer (it didn’t), strengthens bones. So I will never know what my mother’s bones were like at my age, but I do know my maternal grandmother and paternal grandmother did not have osteoperosis. Only 10% of us diagnosed with osteopenia will develop osteoperosis. But it is important to know about before you start aromatase inhibitors. Where Tamoxifen builds bones, aromatase inhibitors can deplete them. This has been on my mind!

I am fresh from my appointment with the specialist at Fred Hutch in Seattle. I was hoping with my low (but not ultra-low), recurrence rate risk she would look at my poor tolerance of tamoxifen and tell me further forays into endocrine therapy were entirely optional. Alas, she did quite the opposite. She printed out a New England Journal of Medicine article from 2017 showing that, in broad terms, my tumor characteristic risks were about a 14% 20 year recurrence rate with 5 years of endocrine therapy, roughly 28 without. I did note that this paper is alomst 10 years old, but it is unlikely all that much has changed. These numbers are generalized, of course, but the mammaprint (which gave me 98% metastasis free at 5 years with 5 years of endocrine therapy) and the Oncotype tests (4% 5 year distant recurrence risk, which lines up with the mammaprint pretty squarely) genetic tests don’t look very far into the future. Diagnosed at 49, I am still considered “young” for this disease, so we are looking at hopefully another 40-50 years of disease-free existence. Hooray for medicine, but also, I was brought to tears at the idea of trying endocrine therapy a second time. I fought hating Tamoxifen, but taking a holiday from it showed me just how negatively impactful the side effects were. I do not think I could go back on it and endure with any joy in my life.

The new doctor’s prescription is exemasthane (Aromasin), which is the one steroidal aromatase inhibitor (AI) among the three common AIs. It is considered the nicest one for side effects, especially hot flashes. She is choosing it because hot flashes were my primary complaint with Tamoxifen. Along with this, after 3 months or so, she plans on administering bisphosphonates via IV, roughly with a plan for 6 infusions over 3 years. These help strengthen bones and the medication in particular makes bones unattractive for cancer cells to grow in. I’m not sure we know why. Side effects include feeling flu-like for a few days, so not as awful as daily AIs, but there is a tiny weird chance to develop bone death in the jaw if you need dental surgery in the future. I have good teeth, but be sure to ask your docs about this strange side effect. It is rare and can be cured, but it doesn’t sound pleasant, and mostly affects people who need to have teeth extractions or implants.

A hot flash and menopause note: due to covid, I skipped an obgyn checkup with the obgyn’s consent. I had no concerns and good health. I think I was seeing her every other year. She never told me to note my last menses, and I was lax about it, as I wasn’t very worried about pregnancy for my own reasons. When I was diagnosed with breast cancer, docs naturally asked when my last cycle was and the male doctors I was predominantly seeing essentially gaslit me into thinking I was still perimenopausal. In hindsight, I was most definitely post menopause by March, 2024 (defined as one year past my final cycle).

I never had any menopause indications except a few heavier periods in perimenopause. Not. One. Hot. Flash. Nothing! Just a cessation of menstruation. So the endocrine issues of body temperature regulation I experienced were entirely due to Tamoxifen. Going off the drug in the last month has confirmed that Tamoxifen alone was to blame for my continuous discomfort. That said, with the new prescription, I may also start accupuncture, which is proven to help with hot flashes without side effects. There is an accupuncturist near where I live, but there is also an option to commute into Seattle (an hour and a half plus a ferry ride) to get specialist acupuncture treatments. If it works for me, fantastic! It takes a few weeks of weekly treatments to kick in, and then needs to be maintained weekly. The rub is that insurance may or may not cover it, and if it does cover it, it may only be 10-12 appointments in one calendar year. Wouldn’t you just like to put insurance companies in a dunk tank and throw balls at the dunk target all day long?

I am once again a prisoner of hope going into this new type of medication. One med at a time, the new doc says! So I will start exemasthane, insurance willing, in a week or so. I am trying not to feel wry that this diagnosis was my birthday gift last year and this year it is a new suite of endocrine-crushing medications. Sometimes it is hard to see that these are gifts! If I had not been diagnosed, 53 might have been my final birthday. Fifty is coming up in a few days. I am happy to be here and be cancer-free, but I don’t wish this ongoing preventive medicine and scans, tests, squeezes, and blood draws on anyone. :(

To be clear and up front, it wasn’t just the hot flashes I couldn’t tolerate with Tamoxifen. I was having them at a rate of 24+ a day. The dry skin on my back in particular was intense and became acne and is still healing! So wildly itchy!! My scalp went off the rails with sebbhoric dermatitis that stung and crusted and ached and made me feel like an embarrassed, awkward teen. I developed nerve twinges in my back and left hand that I had never had before and couldn’t attribute to anything else. My hands and feet were constantly throbbing with heat or frozen blocks. I sunburnt in under 3 minutes. There was ALOT going on. Insomnia and brain fog were also part of the picture. My body clearly was rejecting any amount of the medication, and I did try doses 10 mg and below in all sorts of comnbinations and times of day. How I envy those of you this drug worked for.

On this brief one-month endocrine therapy holiday, I felt like myself again for the first time since I began the drugs in January. To curl up with a blanket or start a conversation (one of my reliable triggers) without a hot flash has been exquisite.

The new doc did acknowledge that with my suite of side effects on Tamoxifen, no amount of good eating, exercise, or meditation would have helped me overcome the things I was experiencing. It is a good thing to know when you have had enough. My side effects were definitely in the unusual and extreme camp. If you have not started the drug and are afraid, just be vigilant and learn as much as you can. And trust yourself. Most of us will not have these side effects.

Now I am rooting for exemesthane and bisphosphonates. I know the AI drugs are superior to Tamoxifen in cancer-fighting power, and the bisphosphonates, which no one had ever offered me previously, will help my bones and at least offer me something I can do even if I end up not being able to tolerate the AIs.

Pam/Livinglifenow, we see you and want you to know we are here for you! Your story gives me a little more strength to dive into this next stab at reducing my risk. Remember, everyone, that we are all individuals. Most breast cancers do not recurr. But some do, no matter how good we are at following all the best advice.The more you know, the more these diagnoses are like crossing a busy highway. There are hazards, but we can avoid most of them, or at least help each other see the oncoming hazards. When you don’t educate yourself, or don’t reach out to others, it is more like swimming across a muddy river full of crocodiles. Learn, connect. Hope, vent. Begin again.

Pam, Keep us up on your progress when you have the energy. We are thinking of you! I will let you all know how the new meds fare in my system.