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Hormonal therapy
Rose333
15 Posts

I am 62 years old and had a lumpectomy on June 29 I have been diagnosed with stage 1 invasive ductal carcinoma and extensive ductal carcinoma My pathology report says pt1 c. And pn0. Which doctor google says it’s early stage 12 mm and no lymph node involvement. I’m PR/ER positive and her2 negative I’m playing the waiting game with oncologist I’m interested to see if anyone else was diagnosed with the same and the type of treatment they received. Dr google says probably will only have radiation and hormonal treatment I’m afraid of the side effects of Aromatase inhibitors.

17 Replies
LD14
1 Posts

I am 57 years old and had a similar diagnosis as you a year and a half ago. I was offered lumpectomy with radiation or mastectomy and have been taking Aromatise inhibitors.
I was VERY nervous about taking the hormone blockers because of comments posted about the terrible side effects. I haven’t had any of these side effects so far and am hoping this will make you less anxious.

supersu
1297 Posts

@Rose333

hello over there on this holiday Monday!!

I don't usually get a chance to connect during the week like this, so happy to have seen your post!

my experience: I had 2X lumpectomy, radiation and then started take Arimdex exactly 2 years ago. I was 58. other than an initial reaction, (upper joint stiffness and pain), that honestly resolved itself within a few days, I have not had any trouble with the aromatase inhibitors. I was also told, that if I did not handle one type, that there were others to try out.

each and every story is different. I am sure somebody else is replying right now saying the opposite thing that I am, so I do understand your hesitation. every drug has the potential of side effects. I would hope that you are able to tolerate the medication(s) if your medical team deems them helpful in your situation.

do let us know how you move along. we are here.

cheers
su

#AI #breastcancer #hormonaltherapy

t3t
37 Posts

@Rose333
I have the exact same thing, surgery Nov. 25th, 21, having my last radiation treatment today, 20 treatments in total, no real side effects, I have some radiation burns but not serious, no pain, will see the radiation oncologist today and the regular oncologist on August 15th and will go on tomoxifin for 5years all looks positive at the moment hope your outcome is as positive

Runner Girl
2894 Posts

@Rose333 @t3t @LD14

I did 2 years on Tamoxifen. My side effects were leg pain, foot pain, hot flashes and night sweats. I took magnesium for the leg pain and had acupuncture treatments every 3 weeks to completely mitigate the other side effects.

I did 3 months of Exemestane. It was fine for the first 3 weeks, no effects at all and then….gut pain, serious gut pain and terrible diarrhea. Investigated, discovered a filler called mannitol - it is a sugar alcohol that can linger in the intestines causing bloating, gas and diarrhea. Since I already have IBS-D it sent that into overdrive. When I discussed with the oncology pharmacist he had no idea and learned something from me.

Then I went on Anastrozole. Been on it just over a year now, will be on it until December, 2023. It is awful for me. No gut issues like the Exemestane, but it does have lactose in it so I have to take lactase enzymes with it. I have bad pain in my feet and hands right now. The pain seems to rotate from one part of the body to another, hangs out in one place for a while then moves on. The hot flashes and night sweats are supersized. I joined a FB group of women on AI's and its wonderful to know that all these side effects are happening to others as well. We share our info and try to help each other deal. I go for acupuncture every 2 weeks - she adds a little electricity and that seems to zap things into submission for a short while.

My oncologist says I can go back to Tamoxifen - but the recurrence rate is not as good as being on an AI. I'm doing all I can to stay on this drug for the 3 year duration. I'm more afraid of the cancer coming back than I am of the side effects.

Remember, not everyone will get side effects, our bodies are all different. Try the meds and if they don't work for you ask for something else.

CaffeineX
17 Posts

@Rose333
Hi Rose, all your stats are pretty much identical to mine which was diagnosed almost 2 years ago. So from my experience I can tell you the treatment I was given. Lumpectomy, followed up with 10 days of radiation and Tamoxifen. Tamoxifen was chosen for me due to vaginal atrophy (quite possibly the least discussed impact of menopause). All in all, I think everything has turned out well. I thought I had some side effects from the Tamoxifen due to experiencing painful joints but it turned out to coincidently be the onset of arthritis in my knees exacerbated by an old sports injury.
i hope this helps, even though we are the lucky ones with our diagnosis, it is a long journey of learning none the less. Lots of aha moments as your body responds to treatment. Keep reaching out, the people on this site are fabulous and able to quiet the mind with answers to all the nuanced questions we have!

Rose333
15 Posts

Thank you. Sounds promising. I’m also sceptical as I had a hysterectomy at 45 and threw me into menopause and I went Into a deep depression. So it freaks me out. I’ll know more when I see the oncologist on Aug 10.

ValP2022
23 Posts

@Rose333
Hi Rose. I am 52 yrs old and ER/PR +, Her2-. I had a lumpectomy and sentinal node surgery and just finished day 4 of 21 for my radiation therapy. I will start femera in Sept. A good place to look for info is your pharmacist. They know what meds you are on and potential side effects of hormone therapy drugs. I'm not looking forward to hot flashes and night sweats again as I thought I was finished with them, so I'm hoping the side effects are minimal.

Something that helped decrease them when I went into menapause was no alcohol, as few sweets as possible and less caffeine. Made a difference for me.

Good luck! This is a hard journey

Hollykins
29 Posts

@LD14 IIf the side effects are bad w one then you can just switch to another like I did. 3 years & doing ok. Just remember it's the women who have many side effects are the ones commenting on forums. The ones with no or few side effects are out living their lives. Don't assume it will be bad.

Many of us take tart cherry capsules for joint problems. I buy Carlyle brand 7000 mg Tart Cherry capsules. I take 2 per day to equal 7000 mg. Thousands of women have dealt w this. You will do well!

TT53
257 Posts

Hello @Rose333 I was diagnosed in 2019 at 68 years old. My biopsy read pt1a. ER and PR+ and HER2-. I had extensive DCIS that didn't sow up on a mammogram. I went thru two lumpectomies they did not get clear margins. So when they suggested a third lumpectomy, I opted for a mastectomy. Totally my choice and not what the surgeon or the oncologist recommended. But, I could not go thru another surgery, to find out they did not get clear margins I would have to have a mastectomy anyways. Because I chose mastectomy, I did not have to have chemo or radiation. And I was told that taking hormonal therapy would only give me 1% greater chance of not getting a occurrence. So I am not doing that either. The oncologist input all of my stats into a computer program where it gave me a report as to the percentages of future events. That gave me clarity. Good luck, sending hugs from BC

M…

Rose333
15 Posts

@t3t Thank you! I'm glad treatment went well. Why did it take so long to start radiation? Did you work while you did radiation. They said radiation side effects, are mostly burns and fatigue. The radiational oncologist said that i could do 5 intense treatments, or 16 regular. Just wondering what I should do?

t3t
37 Posts

It took so long to start radiation because I insisted they do other tests, I would not consent to radiation just because some medical person told me to, my radiation is now done, I had 20 sessions, my oncologist did not recommend the 5 intense treatments she said it is too hard on you, I have radiation burns, no blistering yet, no skin splitting, today is day 5 was told the radiation continues to work for 10 to 14 days so could still have some side effects, am keeping well moisturized, my theory if it does not dry out it cannot split. I have had no fatigue, I am retired so did no work but am a very busy person and did not slow down at all. Hope this info help you, if you need any other info just ask

Rose333
15 Posts

@t3t thank you. Im not ok with hormone therapy. So I will ask about other tests too. I already have arthritis and joint pain. I’m not interested in night sweats, depression and or heart problems. glad to know your radiation oncologist said it’s harder on your body. Mine said I would be a good candidate for intense radiation. (5 sessions). Every doctor is different. Wishing you speedy recovery and cancer free life. Thank you

Barbb
2 Posts

I had the 5 radiation treatments. Individually there is more radiation but overall it’s less. I had no blistering or burns. Just turned pink quickly. I’m 65 with er/pr+, her2-. I had a 1.8 cm tumour, grade 1, stage 1. I also decided not to take hormone therapy because the benefits were small and I already have bone loss and arthritis.

@Rose333
I had the 5 day radiation instead of 16. My skin turned pink then tanned. I used water based cream for the dryness. The fatigue wasn’t too bad, but it lasted a long time. When I was hiking, I just didn’t have the energy that would be normal for me. I took Anastrozole for one year - too many unacceptable side effects that I couldn’t live with. I took Tamoxifen for almost 3 months and went into deep depression among many other side effects, so that didn’t work for me either. Now I am supposed to try Exemestane but I am afraid to start. I hope the treatments work better for you. Some people have no problems on the hormone therapy. I have a friend who is on Anastrozole with no problems.

Rose333
15 Posts

@Barbb I’m really confused with the percentages. One doctor say 5-13 percent with radiation of returning. So how much can hormone therapy do? if they are talking about 1 or 2%. What’s the point. Also 62 and wondering if there is some holistic way other than hormone treatment Unless the hormone therapy reduces chances of all cancer growing someplace elsewhere. Then it might be more beneficial. I have my chemo oncologist appointment on Wednesday. I’ll ask and keep you posted 😊

Rose333
15 Posts

I’m not sure of which hormone medication I’ll be on. According to this website and my age it will probably be the AI. Not looking forward to hot flashes either. Will keep you posted

Barbb
2 Posts

@Rose333 I found that every specialist had their own numbers. The radiologist said radiation would would reduce my chances from 8% to 4%. Then the medical oncologist said tamoxifen (not AI’s because of current bone loss) would reduce my chances from 5% to 3%, the surgical oncologist said after surgery my chances of recurrence were 1%. So which one was right? As for holistic ways of treatment, of all the research I read, the best way I’ve read of reducing chances of recurrence is a combination of exercise and eating well. The combo can reduce your recurrence rate by half. Here’s a link to one article that has links to studies about diet and exercise. https://www.frontiersin.org/articles/10.3389/fpubh.2022.797794/full

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