Wondering if I'm taking the right path...

Hello,
My name is Melissa, I was diagnised with BC on Sept 21, 2023, the tumor was 2mm in size. Long story short, I had a lumpectomy for the first surgery. The 2nd time the margins were inconclusive due to suspicious tissue, then I decided the third surgery would be a matectomy with a tissue expander placement for future reconstruction. Turned out there was still 8mm of DCIS discovered in the pathology report which meant the mastectomy was the right choice for me.

As you read all of the comments on your post, everyone's cancer is different which means treatments and surgical options are different for each person. Trust yourself in knowing that you will make the right decision for YOU. There is no one in this world that knows you better than YOU! BC is complicated, it isn't physically the same for everyone, although, mentally it is in multiple ways. TRUST your instincts and give yourself grace along the journey.

Hugging you right now!

Melissa

Thank you. So much.

I went to a panel discussion on breast cancer here in Omaha. From that I took away several points. 1) Having a mastectomy does not reduce the chances of breast cancer returning. 2) if it does reoccur, the 4 most common places it comes back are the Brain, Bones, Liver, or lungs.
What was your oncotype score? Mine was 22, so I did not need chemo. I had IDC stage 1B. I elected to have a lumpectomy, radiation and take an AI drug for 5 years. My lymph nodes were all clean. I did have genetic testing but found nothing concerning - but I do have relatives with breast cancer - including a sister. I finished my drugs last November - so I hit my 5 years. I thought the end would never come 🙂

Get the Oncotype test done! It's a test on the tumor they remove. If it's above a certain number - you need chemo. Since a lymph node was positive - I'm really surprised you did not already have chemo. you are so young - they will put you on Tamoxifen if it is ER/HR+ You have to take control of your treatment and the most important thing is to get an oncologist and cancer team that you trust. But it's still your decision. Best wishes.

Thank you for sharing, Kathy. I have not heard anything about an oncotype score... It MIGHT have been mentioned after my last surgery, but I was obviously so out of it, who knows what she might have said. I believe chemo is on the radar as the follow-up nurse told me to make an appointment with the oncologist I consulted with a while back. I am still awaiting my post-op appt. with my surgeon next week. She's pretty thorough; just sucks that she went out of town a couple days after my surgery. I'm definitely staying diligent in following up!
Trying to keep in good spirits in the meantime.
Thank you.

p.s. Congrats on completing your 5 year journey! Did you have any side effects from the drugs along the way? Which AI were you taking?

@copingatround2 the Oncotype test is done on tumors that are ER+ and HER2- with up to 3 positive nodes. Many of us who would have had chemo before this kind of testing (Mammaprint is another one) avoided chemo as a result of a low score. I had a grade 3 cancer, highish Ki67%, lymphovascualar invasion and a positive then equivocal then negative HER2! I as headed for chemo but my Oncotype was 8. I did letrozole for 5 years after double mastectomy. No radiation or chemo. I am 10 years out knock on wood.

I started on Anastrozole in November 2018- I was age 63. After about 3 or 4 months - the joints in my hands hurt so bad - I could not do my hobby (sewing). By June my pain level was at least a 7, also my toes & shoulders hurt as well. Other side effects included: insomnia, dry skin, dry hair, constipation, vaginal atrophy. The AI's suck all the moisture from your body - it blocks all estrogen being produced in the body (not all of it comes from the ovaries). I insisted the Oncologist change drugs. First she sent me to a Rheumatologist to make sure the hand pain was not arthritis. Which took more weeks - so finally in November (now 1 year on the drug) - I got switched to exemestane. After 10 to 12 weeks the hand pain reduced to a 1 on most days. If it had not - I would have quit the drug. I read that something like 40% of women on an AI - quit taking it in the first year because of side effects. The AI drug - reduces your reoccurrence level by 50%. So if your level is at 10%, then it goes down to 5%. They actually wanted me to take it for 10 years, but I declined. When I pressured the new doctor (my old one retired) as to how much it would reduce my reoccurrence level, she admitted it would be < 3%. So I decided I was done. I'm 69 now. I still struggle with some insomnia, but most of the other side effects were gone within 4 to 10 weeks. Keep in mind - different people have different side effects. I met a woman who had finished her 5 year & she told me she had 0 side effects the whole time. So you never know what side effects you will get with each drug. There are 4 (I think) AI drugs, for post menopausal women. For pre-menopausal, it's Tamoxifen. You have to trust your doctor.

Aromatase inhibitors suppress estrogen from the adrenals.

It helps to try different AI's, different manufacturers. I ended up taking brand name letrozole (Femara) though in the last month I found a generic I could tolerate.

I found that walking at least 40 minutes also helped, as well as tai chi. I was fortunate in not having severe issues (except for bone loss which has been mitigated with Tymlos).

I did the Breast Cancer Index test to see if I would benefit from extended treatment and the answer was no. I felt safe while on Femara to be honest, but I followed the advice of the BCI and stopped.

I would question the assessment that a mastectomy does not change anything. I only heard about lympho vascular invasion post surgery and was told by my oncologist at JohnsHopkins that it was good that I did the double mastectomy as it removed all that tissue, as I had a small amount of it. I also had some microscopic DCIS that got removed with the tissue. I feel positive about my choice. I also did not reconstruct and I feel that it will be easier for me to detect any changes.

I agree it's a personal decision. They explained that no matter how good the surgeon - there is still some breast tissue left behind by the muscle wall. They also had a study of 10,000 nurses that showed the (people with similar cancers) had 2 groups and 1 group chose mastectomy & one did not, that the reoccurrence rate was the same in both groups. This was a panel of highly respected surgeons, oncologists, etc. from the Omaha area. They said the 4 places it most likely came back in was the brain, bones, liver & lungs. Statistically, it did not come back in the breast as you would expect it to. I was also surprised with this information. This was in 2019. My tumor was right up against the chest wall. I had already chosen a lumpectomy & did not have the BRACA gene. I'm sure each person is different.