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DCIS with/without hormone treatment; worrying

22 REPLIES 22
Diana
Member

Re: DCIS with/without hormone treatment; worrying

I have a high grade comedo necrosis DCIS with wide area of calcification. I had left SSM with immediate DIEP reconstruction on 8th October. My path result shows ER and PR positive, with additional grade 1 invasive ductal carcinoma. My consultant at Marsden said that i do not need chemo or radio therapy, just 5 years of tamoxifen to prevent recurrence. I am sure each individual is different. I am aware of the side effect, but I was told that tamoxifen is the best solution for me. I recently read an article about tamoxifen trial result on the American Soc for Clinical Oncology http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=52&ab... which mention that the evidence shows, it may prevent DCIS recurrence.

From the information I gathered, HER & ER positive is associated with higher risk of recurrence. At the end of the day, we are in the hands of those expert treating us, it would be their judgement in prescribing the treatment. My consultant said that if you ask 5 doctors, they would give different opinions.

SuzanneP
Member

Re: DCIS with/without hormone treatment; worrying

I know the results of my ER and PR status (both positive) but never asked about HER2. Would the hospital automatically have tested for this as they tested for ER and PR? My hospital only seem to give out information if you ask specific questions.

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

Hi Jo

I was never tested for anything and was told that the effects of tamoxifen would outweigh the benefits, however it would be nice to know so I could make an informed choice!!. My oncologist wanted me to go on the clinical trial but I am not yet postmenopausal so would qualify. Arimidex sounds promising, definitely. I may ask again at my next appointment.

cottoneyedjo
Member

Re: DCIS with/without hormone treatment; worrying

Hi

Was interested to see this thread as I have the same type of BC as Cathy59 (Intracystic Papillary with Intermediate DCIS with (in my case) a small stromal invasive component).

I was told that this type is ALWAYS 100% ER+ and is therefore highly receptive to hormone treatment - I had WLE, 3 weeks of rads and am now on Arimidex (postmenopausal). I have had NO side effects (yet - been on it for 4 months) and have been told that it reduces my chances of recurrance by a third (33%) so am glad to be on it. I have also been told that Arimidex doesn't have the danger of ovarian cancer that Tamoxifen has after 5 years so women in the US are staying on it after the 5years.

Jo xx

JoJo11
Member

Re: DCIS with/without hormone treatment; worrying

Hi Everyone.

After being told the tests were not done, when I finally got a copy of my path results, there they were. I'm ER- PR- Her2+++, so tamoxifen presumably would not have any advantages for me.

Presumably the trial is only recruiting hormone positive women? Too late for me now anyway as I think they are looking at within six months of surgery.

Jojoxxx

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

Hi Myrtle

It is a tough call. Your damned if you do and damned if you don't. If I could get on the trial, however, I would go on it. Firstly, I would hope that the trial co-ordinators would ensure that the pros outweighed the cons and you would get careful screening to ensure you wouldnt be at serious risk of side effects. Obviously, they wouldnt be able to guarantee that you wouldnt get any,but at least you would be carefully screened. They have to go through very tight guidelines to ensure safety of those recruited. Secondly, you would be monitored very carefully, not just for side effects of the drugs, but for any sign of recurrence etc. There is no "right" choice in this as we are talking about drugs with potentially serious side effects versus cancer but to me the thought of avoiding/reducing invasive cancer would be my priority.

myrtle
Member

Re: DCIS with/without hormone treatment; worrying

I suppose I must fit the criteria for the trial but really don't know what to do. I was told that women with DCIS don't normally get offered one of the drugs but the study is trying to find out if it is beneficial? Bit of a guinea pig? I think that with regular yearly mammograms ahead, I might just give the drugs a miss. Many thanks

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

Hi Myrtle

I have just replied to you on another thread. My oncologist was talking to me about the same trial. Unfortunately, I am not postmenopausal so dont fulfil the criteria . He was saying that statistically, tamoxifen etc are not offered to women because of the side effects. However, for some high risk individuals, it is a good thing. He has just moved from the Marsden where they do single out certain women to take tamoxifen. For me, as I was intermediate grade with a very small tumour, he said that the effects of tamoxifen would most certainly outweigh the benefits so not necessarily useful, but for someone with widespread, high grade DCIS, would make more sense to take it. This is where statistics which are just generalisations used to lob us all into the same basket, are not much help to the individual.

myrtle
Member

Re: DCIS with/without hormone treatment; worrying

I am waiting to hear if my tumour( high/intermediate grade DCIS) was ER positive and have been told that ordinarily I would not be offered hormone treatment but have been invited to take part in a double blind study with Tamoxifen or Arimidex (wouldn't know which one I was taking) but having read all the side effects that others are having, do I really want to put myself through five years of that if it isn't necessary? Have been told they could reduce recurrence by 17% but is that a big enough percentage?

SuzanneP
Member

Re: DCIS with/without hormone treatment; worrying

There is controversy around giving Tamoxifen to ALL patients with DCIS but I think it makes sense to test all breast cancers for their hormone status.

As rads give a 50% reduction in recurrence and Tamoxifen gives a further reduction of another 50% at 5 years then it depends on your own individual risk of recurrence in the first instance. If you have a low risk of recurrence then it may not be worth the side-effects from the drug but if you have a high risk then it may well be that you want to take the drug if you are hormone positive to reduce your risk of recurrence even further.

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

I did ask my oncologist last time I saw him and he said simply that the side effects of tamoxifen would outweigh the benefits. To be honest, after hearing what tamoxifen does, I am secretly quite relieved!

SuzanneP
Member

Re: DCIS with/without hormone treatment; worrying

My hospital tests DCIS but only gave me the results when I asked for them after seeing on here that others knew their hormone status. I'm sure your doctors will be happy to explain why you aren't being put on hormone treatment if you ask them.

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

I would be very interested to know if there are guidelines about hormonal treatments. My hospital don't test DCIS so I will never know if tamoxifen would have been useful. It does some a bit of a lottery as to what treatment you get

JoJo11
Member

Re: DCIS with/without hormone treatment; worrying

Thank you to everyone who has replied.

Mole - I did trawl the Nice guidelines and there don't seem to be any specific guidelines for this so I suppose it is just up to oncologists discretion. I'm due my first post treatment visit on the 14th, so I will ask again.

Jojoxxx

Molennium
Member

Re: DCIS with/without hormone treatment; worrying

I had invasive cancer as well as DCIS but even so I think tamoxifen would halve the risk of recurrence if you have hormone receptive DCIS

so i think they should test, not sure what the NICE guidelines say though (Improving outcome for breast cancer, revised version 2002). this is what breast units are meant to follow

Mole

Summerdays
Member

Re: DCIS with/without hormone treatment; worrying

I have just had the all clear following WLE for DCIS, my consultant said that there was no need to test for it being hormone receptive because it was still at the non invasive stage, confined to milk ducts, and they only test if there has been spread to lymph nodes, or any chance of spread. Hope this helps Jojo.

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

Just saw this thread - i asked if my DCIS was hormone receptive and at my hospital they don't even test DCIS so no wonder tamoxifen etc was never mentioned. I am so confused as to why different units have different treatments. Why can't they standardise them and we would all be much clearer. They do this for children's cancer - all the specialist units have standardised guidelines - obviously there will be variations according to each patient, seems hit and miss to me with us lot

Molennium
Member

Re: DCIS with/without hormone treatment; worrying

different women have different likelihoods of recurrence. Tamoxifen halves the risk for a particular woman. My risk was about 2 % so it halved to 1%. I didn't think this was worth it when I had a lot of side effects

Mole

helfire
Member

Re: DCIS with/without hormone treatment; worrying

Hi all

I had a mastectomy for DCIS last year, followed by radiotherapy and Tamoxifen. The way the risks were explained to me was, the general population has a 1% chance of getting BC. After you have had it the chance of recurrance goes up to 5%, if you take tamoxifen this is decrease to 2% recurrance. However after 5 years the risk of getting womb cancer becomes higher than risk of getting a BC recurrance, hence they take you off it after 5 years.

I don't know if all the facts are up to date, but this is how I have had to rationalize all the bumpf they have thrown at me, in order to be happy with the treatment I'm getting.

Hope it helps, remember everyone is different and talk to your medical team until you are happy.

Helfire

Terri
Member

Re: DCIS with/without hormone treatment; worrying

Hi JoJo

I had 130mm high grade DCIS with 1mm of micro invasion I just had a mastectomy and yes I did worry about not having Tamoxifen or anything else but when I looked up the risks from taking the tablets the risks were far greater taking the tablets.

lynnietom
Member

Re: DCIS with/without hormone treatment; worrying

Hi Jojo
I had WLE and 5 nodes removed on January 31. I'm due to have 16 sessions of radiotherapy starting on 17 March. When I got the results from my consultant he said the lump was hormone receptive but the side effects from tablets would out way the benefits so I'm not having any!
I feel like you - delighted not to be taking a tablet daily for 5 years BUT a bit worried that I'm not having all the treatment needed.
We just have to trust that our treatment is tailored specifically for us.
I'm being treated at Nottingham.
Take care.
x

ForumMember
Member

Re: DCIS with/without hormone treatment; worrying

Hi JoJo

If you feel it would help, you are welcome to call our helpline for a chat with one of our specialist breast care nurses for information and advice. The helpline is open Mon-Fri 9am-5pm and Sat 9am-2pm on 0808 800 6000.

Best wishes
Lucy

JoJo11
Member

DCIS with/without hormone treatment; worrying

Hi everyone.

I had DCIS (high grade) treated by WLE , 5mm focus, no micro invasions,clear margins (nearest margin 1.8cm), then radiotherapy. I was told that DCIS is not routinely tested for hormones receptors as they would not recommend any further treatment anyway. At first I thought that was good news - but some of the posts on this site, and some info on the american sites has got me worrying. My oncology was handled by Charing Cross.
Anyone with same experience?
Best wishes to all,
Jojo

PS I did post a similar enquiry on a thread started by someone else, but only one reply, so apologies if you have already seen it.