DCIS and endocrine treatment

Ask your oncologist specifically what the benefit is to you of taking tamoxifen - they should be able to give you a percentage benefit over 10 years. This takes into account your specific diagnosis, tumour size, grade, nodes involved, age etc.

Then you can discuss with the oncologist what that number means, what the pros and cons are and hopefully help you decide whether you think it's worth it.

Tamoxifen does have some side effects and we're all different, but it's typically a lot easier to deal with than the aromatase inhibitors which you said aren't available to you. I believe (check this with your oncologist) there's even evidence that tamoxifen can help with bone strength so that might be a consideration.

If you take it, you may well find that the side effects are very mild, so whatever benefit is worth it. If you don't like the side effects, you can always stop taking it - nothing is set in stone.

I also found the hormone treatment discussions / decision very stressful - I think many of us do. It's one thing having surgery or another treatment and then going into a recovery period - these hormone treatments last for years. It's very intimidating.

However, I've been on tamoxifen for ~9 months now and the side effects are very mild. I'm happy to keep taking it for now, and I'm glad I gave it a shot.

Hi, I wish I had a definitive answer for you but I certainly agree that ER+ is very unpredictable especially for late development of cancer.  Since you had high grade DCIS it makes me think that anti estrogen therapy is a good choice.  I had DCIS in right breast and it was low and intermediate grade but ER+ 100%.  Had Stage 1 invasive in left breast 3 mm tumor so small but also 100% ER positive so both surgeon and medical oncologist wanted me to try anastrazole. My bone density is good but that is from hrt.  I have attached this article for you and it is long and technical but if you go to the discussion at the end very informative.  YouTube had excellent videos on anastrazole and the AI’s too.  Definitely do your research and then make an appointment and get the data.  Hugs snd good thoughts to you.  Here is the link and hope it works. https://www.nature.com/articles/s41416-020-01228-2

Barbara

Been doing some research and this article will help you so much to make a decision.  It is recent too 2022.  Here comes the link https://ascopost.com/issues/january-25-2021/anastrozole-vs-tamoxifen-to-prevent-dcis-recurrence-key-difference-may-be-side-effect-profile/

Barbara

Hi I’ve been diagnosed (pending pathology) with intermediate to high grade DCIS 55mm and have been told my hospital don’t test for hormone receptors, is this unusual?

Hi Gertie,  I think it is very unusual as it is important to know that information as if it is Estrogen positive they usually prescribe anti estrogen medication.  I live in Florida and it is common practice to have it done.  You can ask to have the specimen sent to a pathogist and facility that will do that for you.  Also since your DCIS was intermediate to high grade and 55mm I would definitely be persistent and ask for it.  Be interesting to see other responses too.  Best of everything as you are just beginning on the cancer path.  I had DCIS right breast low to intermediate grade and Stage 1 invasive cancer left breast (3 mm).  Lumpectomy on both of my small breasts and then radiation and now anastrazole as both cancers were estrogen and progesterone positive 100%.  I feel good now but there were ups and downs.  For me it was the emotional roller coaster ride as surgeries and radiation were not bad.  Lots of tests and insertion of clips etc but not too bad either.  Nice to be done and you will feel that way too.  I don’t know what surgery will be recommended for you but there is time for you to gather information.

Barbara

Hi Barbara, I’ve got therapeutic mammoplast surgery on 21/7 so not long to wait. Hoping all will be ok.

Hi ER positive 8/8 is really good it means it will respond to all oestrogen treatments, 0/8 would mean it was ER negative

Hi there,  I know surgery is stressful but if you can try snd relax snd deep breathe it really helps.  Doesn’t take all stress away but helps some.  Glad you don’t have to wait too long for surgery.  The unknown is hard.  I remember when I had lumpectomies and wondered how everything would turn out.  I have always been small breasted so was concerned about how much tissue removal would be done & if I would be OK.  Thank God I am good with everything.  It is not an easy road but can only tackle one thing at a time.  Take care  and funny movies are great for reducing stress!!

Hi yes it is stressful waiting. I am ok atm but I’m sure the day before I’ll be a wreck, I’m going to try and keep busy. Luckily, this isn’t my first op, I’ve had quite a few over the years for other things, including a hysterectomy, so it’s not new to me. But I was younger then so who knows. Yes I’ll watch a few good movies if I get chance. Thank you x

I know what you mean about being older and needing surgery.  I was 72 when diagnosed with BC but did fine after my two lumpectomies.  I think with getting older we understand our bodies and what we need to get better.  Moving and being active after surgery is important but so is rest  A couple of movie suggestions are A Fish Called Wanda with a John Cleese  and Being There with Peter Sellers.

Take it easy.

Barbara