Anyone have permanent hair loss due to chemo + AI + older age?

You gave me lots to think about. My situation is as follows: Bilateral mastectomy May 2025, for 1 invasive cancer right breast plus 2 ductal in-situ (both breasts) plus 2 atypical ductal hyperplasia (both breasts).
1 positive lymph node out of 12. So now waiting for my Oncotype score to determine next steps in treatment.
Chemo vs. hormonal (Anastrozole) vs. radiation or a combination of all 3 (??) I am 70 & received the news I had breast cancer on my birthday in February. Absolutely no one on both sides of my family (Mom & Dad) with breast cancer. I am the first. I have lots of health issues, i.e. heart disease, severe migraines due to a concussion in 2019, some cognitive impairment, small vessel disease in my brain/heart to name a few.
Very afraid of all post surgical treatments - those possible side effects!!
In November 2023 I started a weight loss program (no medication, the old fashion way) and in one year lost 43 pounds. But after 6 months to a year during my weight loss my hair started to thin. And presently is still thin. My nutritionist said my hair shedding was from the large weight loss. I have been maintaining my weight since November 2024 and my hair isn't returning to the way it was, much fuller.
I suppose everything is banking on my Oncotype score...interesting to hear not all your oncologists thought chemo would be effective for you due to low Oncotype score but you tried to be proactive.
Your story is certainly disturbing...I hope some way, some how you find the oncologist with the expertise to get you back on track.

Hello @sloggingthru geez I am sorry to hear about the hair loss.
I remember feeling like a bowling ball with a few hairs, after chemo and again with AI and a few years of maximized dose statins, I found myself wearing hats and scarves when the sun was out. A trial period of discontinued statin had some growth returning.
I settled on a reduced dose that gave me some hair that can be tied up to look fuller. It has come back some more but honestly, it took a lot longer than I thought it would, both after chemo, and with the statin, AI period. It was almost a year before I had a reasonable crop of 1/2” white/gray hair and I was around 40.
You are not alone, and I understand not everyone can just accept it. I am hoping some other folks with extended hair loss will chime in with more ideas.
How long of a time period has all of this taken?

Diagnosed grade 2 idc in April 2023. Initially recommended surgery, radiation and 5 years ai (hr+, her-). Then positive Oncotype and had to consider chemo. All of this is rock and hard place - no chemo and then recurrence in a couple years and feel should have done it etc. so went ahead with chemo. Was told first off “you will loose your hair” and there was a chance of permanent loss. Luckily, I have regrowth but slow, thin, brittle but at least hair. Now on ai, I’m loosing more, can see my scalp, almost need a “combover”. The attitude is really more just be thankful you have hair. Dermatologist suggested minoxidil (2x mens dose once daily) which didn’t help at all. Can’t do Nutrafol because it stimulates estrogen. Unfortunately, I think we’re just stuck. Currently trying rosemary oil and new with that so can’t tell if helping or not but will give it a few months. Will monitor this to see if anyone has any further suggestions and thanks to all who help.

It has been several months. I plan to see a dermatologist, I don't know if oral minoxidil will help or not. I'm in my 60's so I don't know if I will even get an inch to cover my scalp if you had challenges in your 40's. I'm not vain but it's disheartening to me to have to wear a headcover forever, it's very hot and humid where I live. At this point, I would be happy with some short spikes and being able to wear hair pieces rather than full wigs or hat wigs, if I'm going out and want to look like I have hair. I have definitely adjusted my expectations!

Please be patient with yourself, you have been through a lot and your body is still going through changes from treatments. I hope you are pleasantly surprised at how much grows back.💕

I am due to start chemo on the 27th and told about losing my hair. When I told my brother he just jokingly said " well sis since no one really sees your hair anyway cause you love changing up your wigs, I will just have to budget for a supply of wigs." It was so funny that I haven't even had time to worry about losing my hair cause I figured wow this is going to be so much fun changing up my looks with different wigs until hair grows back. And well if it doesn't that's ok too . I will embrace my bald head. I'll just follow the YouTube pages of the beautiful women who have suffered from alopecia all their lives. What I'm trying to say is your hair does not make you the beautiful woman that you are. You are so blessed in many other ways including the fact that us women without hair can slap on a gorgeous wig and go about our business. We are fighters , warriors a whole league of strong women that embraces life no matter what it throws at us. Look in the mirror everyday , talk to yourself and tell yourself how gorgeous you are . Cause sis even though I don't know you I just know you are beautiful inside and out. Your hair does not define you ❤️.

DCIS 22 yr ago at age 48. L mastectomy (couldn’t get clear margins during lumpectomy). Got saline implant. Was raising 3 kids. Refused tamoxifen. Negative sentinel nodes. Fast forward 2 months ago my PCP ordered bilateral mammogram. I have IDC in L breast!! The breast they told me couldn’t get cancer. Await surgery in July. Oncotype score was 8. I will not take AI but have agreed to try tamoxifen at a low dose. Probably radiation but haven’t met with radiation oncology. Will get sentinel node in July. There is a controversy in the literature about whether sentinel node is even possible because it was done 22 yr ago. I am retired RN. Have found MDs that I have known for 25 years very cavalier about my concerns. I am having my implant removed. When I suggested that to my general surgeon she said “you don’t want to do that.” Meanwhile the MRI tech told me she had to keep me on the table longer trying to get images around implant Anyway I am my own advocate for sure. My oncologist doesn’t know it yet but my tamoxifen dose will start at 2.5 mg - i have a pill cutter. They are doing a study currently with lower doses. I have the great luxury of being 70 years and saw enough 80 year olds to know that 80 may not look good on me (other health issues)and am vigorously pursuing quality of my life despite MD recommendations. I will say ChatGPT has been helpful, is free, can log in with Apple or Google ID. Also when I told my oncologist I still have occasional hot flashes- she told me I didn’t. Lol. Honestly I think medicine is pretty broken. Just keep going is really all we can do. So sorry you are in midst of this nightmare

I, too, start AI (letrozole) at half doze for a week before going full doze. It’s been 2 months and I only experience mild joint pain. Then again, my experience

Sorry for the cut off. I hit the wrong button. Anyway I don’t experience serious side effects until after 8 months. I took anastrozole and was doing fine until month 8 when my fingers started to feel so rigid that I couldn’t hold on to any objects. Got switched to exemestane. After a year I developed petechiea on my legs. Now 2 months on Letrozole. So far so good, but I would never know what’s going to happen after another few months. Good luck with tamoxifen.

Isn’t that weird that your doctor told you that you don’t have hot when you are the one that experiences it? I think they should have a course in medical school that teaches med students to listen to patients. If the book says so doesn’t mean that it’ll always be so! After all what’s in the book is the records of reported incidents. What we experience is real life situation that is not always recorded. I’m sorry that your doctor dismissed your valid complaint. Hugs.