The results are in

And the answer is…there are none!

Finally, after nearly five months, I’ve been officially told that they don’t test DCIS for hormone receptors!

So why could no-one have told me that earlier?!*

I’ve decided to continue the Tamoxifen as they’ve agreed that the DCIS was a ‘very high grade’ and ‘aggressive’ with potential to become cancer - but of course they can only point out that there are a variety of side effects and that the risks and benefits of taking it are evenly matched!

So much for the experts

Maddy x

How stupid to have to wait 5 months for them to tell you that.
Interested to know why they dont test as its still cancer but at its early stages, however with a potential to be nasty.

I think its a difficult decision for you to make. However you can start the tamoxifen and see how you feel on it.
Personally i find it hard going but the onc looked aghast when i suggested not taking it.

Sometimes it helps psycologically to be taking something we feel is helping.

Did you ask if its not hormone receptive if there is any danger of taking tamoxifen?

How old are you?


Hi Liverbird -
Thanks for the reply.

I’m 55 and have been taking Tamoxifen since October 22nd last year - my surgeon thought it was a good idea because of possible 7 week delay before radiotherapy ( I finally began rads on December 3rd and had 25 sessions ending on January 9th) - the oncologist thought I ought not to take it because he thought the risks would outweigh the benefits - my GP thought it was a good idea to take it…I wanted all the help I can get so was happy to take it until they could give me a definitive answer …Now what?!*?!

There is always danger taking Tamoxifen - I don’t think the risks are any greater if you don’t need it so I’m putting up with the hot and cold sweats and hoping that a letter to an appropriate authority might help resolve the issue.

Living in hope (and thankful to be alive)

Best wishes
Maddy xxxx

Hi Maddy

Just read your thread, I am a bit confused maybe you could put me right. You dont say here what treatment you have had so that could be the answer. Anyway first off I wish you well with your rads and the tamoxifen also, take care.

I am 47 was dx 23 Oct 2007 DCIS widespread high grade and told I needed a mastect. I had SN 21 Nov with all lymphs clear, 1 Dec 2007 had mast and ld recon and on 22 Dec was told 2mm clearance at chest wall, 1mm clearance at front, 2 areas of micro invasion and that I just needed to recover from the op. No hormonal treatments offered as they dont test for if needed as no breast tissue left to cause any risk of recurrence. I am early menopause, no periods since age 38 so why is it that you need to take tamoxifen? Maybe you have been unfortunate and not got good margins? I hope you are ok.

I am so thankful that I do not need rads or chemo nor drugs but worry that maybe I should be on something. Just like everyone else it is in the back of my mind that this b***** monster might return and dont want to give it a chance at all.

Wishing you well Maddy

Hi All
Just got my results today. Sooooooo good - Had DCIS and IDC grade 3 cancer. It was 24mm with the invasive size being 18mm. Nodes and margins all clear so no more surgery. Hormone receptors showed ER- Positive and PR-positive. All good. My HER2 status not yet ready but told this was nothing to be concerned about. I will be starting radio Therapy fairly soon for approx 4 weeks and next week I start Arimidex for 5 years to be reviewed in 2 years.
So relieved - cannot believe its all gone so well. Have a sore boob and underarm but fortunately no swelling. Brill.
For anyone who is afraid they may have grade 3 cancer, its not all bad. It can be treated. Relieved.
Good luck to anyone waiting. XXXX

Hi guys,
so i´m vegan for about half a year now and my nutrition programm is becoming quite boring, also i´m not quite sure whether it´s all really healthy or not so i came to the conclusion that asking you would be a good idea to find out about the quality of my nutrition (and maybe you can tell me some healthy meals with a lot of protein in them)

so my foods at the moment are:
cereals with fruit berries and soy milk
wholemeal bread with peanut butter
falafel (chick peas with different spices)
whole meal noodles with different kinds of salad
and during the night a shake with soy milk, sugar, protein powder and linseed oil