37 year old with early stage cancer and regretting doing chemo

I am 61, so much older. I had a similar diagnosis in April and opted out of chemo w/ oncotype of 29.

Beesie, I knew age would make a difference, but didn't realize it was that big. If total benefit might have been 15%, I would have been likely to choose chemo also

Fukcancer,

We are here to hear you. 💜 It's a precious forum we have on this site.

When I was diagnosed at 46 I was already at least two toes deep in perimenopause. The BMX and treatment ferried the process along. My oncologist and endocrinologist were convinced my period would return. I haven't seen one in over two years.

My "treatment" was one singular lightning round of chemo. I went in for my first infusion of dose-dense AC and, as my dear friend jokes, I woke up a month later.😊

I was a mess and did not continue treatment. I am triple negative and it was a decision that I made. No chemo.

It took a year until my digestive system felt back on track again. A new track though. I have mementos from that one lightning round - digestive wierdness here and there, some neuropathy in my feet, and a little gum pigmentation.

You made a good choice with chemo and now is time for patience with the process. We are all here doing it. Living with the mementos.

Time and patience are important. Give time time.

And Fukcancer, thank you for everything you shared. It's an experience and you touched me deeply.

Seekthegood -Brava to you for logging on to the forum and sharing. All of us, and especially tnbc girls, gather much encouragement from folks like you. Thank you.

SeektheGood - We just wanted to send a warm welcome to Breastcancer.org. We're glad that you decided to jump in the discussion boards to share your story and support, thanks! If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here.

Best wishes,

From the Mods

Fukcancer, hang in there - it can sometimes take several months (or even a couple years) to get your period back after chemo. Don't despair yet. It is really hard and unfair for us younger ladies in that regard - my heart goes out to you. *Hugs*

Just finishing in April, side effects are still a huge part of your life. I am 16 months out and, this month, feeling better than in years. I could not even put a finger on any lingering side effects (maybe the tinnitus and hearing loss from Carboplatin?). But that is all.

To note, this Tuesday, I cooked dinner on a weeknight, after working all day, for the first time since December of 2017. So, yes, I feel like I've finally rounded a corner.

I’m 38 diagnosed 8/19 had double mastectomy one positive lymph node removed it was positive they said no chemo but recommended radiation with hormone therapy I am sorry you had to go thru chemo I don’t want to go they radiation but I’m ok with the hormone therapy it’s scary but i want to turn it down any recommendations since they say it’s a chance it could come back I’m

Like yes and a chance it might not

DorothyB - I also am up there in age - 59 and got a 28 Oncotype score. Doing chemo reduces my risk of recurrence from 17% to 10% MO says. That seems to me to be so little for the price I will pay for a year and maybe the rest of my life. Also, my life span realistically is only about 20 years more. For these reasons I have been extremely leary of chemo. I just agreed I'd do chemo, but still unsure. Biggest fear of chemo is CIPN - Chemo Induced Peripheral Neuropathy. Pisses me off there are NO studies of how many people get this - only stats my MO says is 30-40% get it temporarily. She tells me that if you still have it one year after chemo, it's permanent. The "Rant" thread about this tells some of the story. CIPN is the biggest SE threat with Taxotere chemo, and I'm supposed to get 4 cycles every 3 weeks. The doc wrote down the SEs and put hair loss, fatigue, nausea and vomiting and last, peripheral neuropathy. I don't believe she would've ever brought CIPN up if I hadn't and don't believe they tell patients enough about this danger. They also have NO studies on women over 50 who do NOT do chemo and only take AIs. Us older women are not studied enough and I honestly feel it's ageism-discrimination.

What convinced you to not take the chemo? Are you on an AI?

Thanks so much!

kaaadams, Look at this thread: https://community.breastcancer.org/forum/69/topics/873778?page=1#idx_26 for details. I opted out of chemo because I felt like the benefit for me was not worse the cost (the "for sure" side effects plus the possible worse stuff). I don't have children or grandchildren, so quality of life is more important than quantity for me. I am on tamoxifen - was building up and was at 12.5 mg but decided yesterday to go down to 10 mg and stay there.

Congratulations on having cramps again!

I hope you will consider Tamoxifen. I think side effects can seem scarier because people tend to post when they aren't doing well on it. I feel as if the tamoxifen makes the chemo worthwhile. Going through all that and then not taking the next step seems harder than doing the med/

But if you try it and hate it, that's different.

Your cancer isn't lobular is it?

yay for girly parts making a comeback.

I was 37 when I was diagnosed- and when my ovaries started working again after chemo they were MAD. A few rough months but we finally got into a groove again (and ironically more regular than they ever were back when I was trying to get pregnant in my late 20s) 🙄 I’ve been on tamoxifen for just over six years and we finally found a workable relationship after the first year or so. The road hasn't been without strange side effects from time to time - but nothing so bad that I’ve wanted to stop. Hang in there!

This probably won't make you feel any better, but many women naturally enter perimenopause in their late 30s.

Sorry you are going through this. Breast cancer is the gift that keeps on giving.

Fukcancer, I really hope you get better. We need better treatments that don't take away so much from us. I think many of us have that thing that we REALLY don't want to lose to cancer. For me it's the ongoing threats to my hand and arm function (I'm a musician) that make me most devastated.

As an aside, I saw a fertility specialist when I was first diagnosed at age 32. I was surprised to learn that even then I was a bit past my prime. What a disconnect from all the years I was told "don't have kids too young, wait until you're established, you have plenty of time," etc., etc. Now I feel like that was one of the biggest lies I was told in life. But I think that line was repeated so often to young women my age, that we never thought it might be otherwise. It makes me sad. Anyway, that's my rant about that.

Thanks for updating us, and don't lose hope yet. Your body is still trying to heal, and it can take a long time.