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DCIS and Tamoxifen query

9 REPLIES 9
lizred
Member

Re: DCIS and Tamoxifen query

managed to speak to my BCN today who persuaded me to do the one step at a time thing (I'm managing it some of the time!) and wait until I have the next WLE biopsy on tues and results from that before we revisit the whole do I need any other treatment or not. So, one day at a time... Sounds like you're doing well recovering from your op - I had major abdonminal surgery earlier this year and it took me ages to get my strength back after, i know it does take it out of you x

Psanchez1000
Member

Re: DCIS and Tamoxifen query

Hi again - yes I'll keep asking the questions. The evidence does seem inconclusive with DCIS and infact elements of what some feel is over treatment. I'm going to get my pathology and take some advice around oestrogenic diets and canabis oils. I have too much family history of strokes, heart disease, blood clots, DVT amongst other concerns of a major systemic hormone therapy drug to consider tamoxifen on what feels not very strong arguments. However I am willing to listen but my BCN said that my surgeon had suggested it as a prophylactic and not required treatment so that is my choice. She also said that she feels the surgeons feel that they have to offer something for younger women with larger affected areas with some high grade DCIS and this is what they have. On a positive I'm in day 27 post mx and DIEP and managed to walk round the shops for half an hour and get a pair of jeans on! Small steps for positive mind! Px
lizred
Member

Re: DCIS and Tamoxifen query

I spoke to someone on the Breast Care helpline yesterday as I'm trying to decide re tamoxifen and she said some areas test DCIS for hormone stuff and some don't and that the evidence around use of tam with DCIS is limited. So, I'm now going back to my team to ask some more questions! Seems like its one of those grey areas at the moment and I don't want to take medication over a long period unless I know its needed and effective. Hope things are going ok for you x

4princesses
Member

Re: DCIS and Tamoxifen query

I too was told that dcis isn't tested for hormone receptors as it's pre-invasive. I had a mastectomy and reconstruction in June as pathology showed the dcis that was known of. Nothing else was found so no further treatment required.
Psanchez1000
Member

Re: DCIS and Tamoxifen query

Hi again - went back to clarify with my BCN and she confirmed that they don't test DCIS and therefore don't know hormone receptors but surgeons recommend tamoxifen due to my age and area affected 9cm. I've asked for my pathology results and she is checking with surgeon that is ok!! I told her that at this stage without further information I want prepared to start any hormone therapy. I'm based in Norfolk and wonder if it's different in other areas of the country. Now very confused as this seems to go against everything I'm reading.
lizred
Member

Re: DCIS and Tamoxifen query

Hi

the consultant I saw today definitely said my type of DCIS was ER pos (she also said this type is less likely to re-occur) and I'm sure this info was given me fairly early on after my first biopsy. Definitely write notes down, ask for things to be explained (I ask things over and over until I'm sure I've got them clear); its hard enough dealing with things without feeling you're being told conflicting info. Hope you get it all sorted xx

Jobey68
Member

Re: DCIS and Tamoxifen query

Hiya, I'm not surprised you are confused! They can't recommend you take Tamoxifen unless you have hormone receptive DCIS , my understanding is they test it the same as they would invasive, Ask them to explain why they want you to take Tamoxifen, absolutely pointless taking it if you don't need to, never be afraid to question anything you are told, you should receive copy's of your pathology results and if not you can ask for them, write things down and try and have someone with you at all appointments as another pair of ears as its so hard to remember it all! XxJo 

Psanchez1000
Member

Re: DCIS and Tamoxifen query

Hi Liz, thank you, really helpful
And you've just added a couple of questions to my growing list! I'll check from my original
Biopsy whether hormones were checked with my BCN. I'll also check in the margin but I'm pretty sure my margin is clear but I will ask again! Please Keep me posted and I'm really interested if I'm not tested for hormones because Different areas are different. And thank you, best of luck with tomorrow
lizred
Member

Re: DCIS and Tamoxifen query

Hi Psanchez

we seem to be in a similar situation - had right mx for what was thought to be 5cm area of high grade DCIS, turned out to be 7.5 cm but lymph nodes thankfully clear. Howver, because of the size and site of the cancer there is no clear margin against my skin so I have been offered 3 options, one of which is tamoxifen, to try and make sure if any cancer cells were left that they don't turn nasty. I'm pretty sure my first biopsy was tested for hormone receptors but would need to double check. I'm seeing different consultant for a second opinion tomorrow so will let you know if they say anything useful about the tamoxifen x

Psanchez1000
Member

DCIS and Tamoxifen query

Hi
I had a DCIS diagnosis back in April followed by sentinel node biopsy so I could consider immediate reconstruction as the grade was high over a large area so mx was my only real option. I'm now in week 3 post surgery form mx and immediate DIEP and for my pathology result today which confirmed no invasion, slightly larger area of 9cm v's earier 7.5cm and high grade in areas and "other activity" but that wasn't clarified. However they are recommending tamoxifen and I wondered what anyone else's experience was with this and DCIS as it seems unclear. I asked what hormones receptor my pathology showed and he said they don't test that for DCIS yet I understand that tamoxifen only works on positive receptors for DCIS. Anyone experiences very much appreciated - I was really hoping that after the surgery I was going to avoid hormone treatment. I'm 47 yrs.