Hi
This is my second post on the forum. Last September I had a mx for 5mm Non invasive DCIS, this was my decision from the start. I would like to know if any one has been offered medication (Tamoxifen)to help prevent this spreading to the other breast. I have asked this question to BC nurse and she says this in not necessary. I have done research on this and some centres do offer medication for this. Has anyone else looked into this? I would also like to know if anyone has further information on DCIS spreading to the other breast. I do feel that I have given my self the very best chance of the DCIS not returning, but I still would feel more confident if I was taking medication for prevention.
Hi I am invasive ductal carcinoma grade 2 . I was put on tamoxifen as soon as I had finished everything they threw at me .
Hello Suziex
I had my first mammogram last Dec and was diagnosed with a 4mm area of DCIS in my left breast. I had an excision biopsy in Jan,and then another in March as the first didn’t get clear enough margins. I have just started 3 weeks of daily radiotherapy. It’s taken a while to get to this stage as the hospital was happy to let me have a holiday before the second op and before radiotherapy as the DCIS was low grade.
I have been told I won’t need medication, but I’ll have an annual mammogram for the foreseeable future. I suspect that there is no hard and fast rule as every case is different. It was the digital mammogram machine used at the Dorset Breast Care unit that found my small patch. In my local hospital they still use a film machine that wouldn’t have shown it.
You mentioned ‘mx’, I don’t know what that is, there’s lots of jargon and acronyms in the comments that are baffling me.
Hi Pennywey
Mx = mastectomy
If you look at the top lefthand side of the page under Categories
you will see the title - Glossary and Useful Words and Terms- click on that and you will find a lot explained.
Hi everyone
I hope I can be of some help here. First of all Pennywey “mx” means mastectomy. Don’t worry you will get used to all the abbreviations and jargon soon!
After my first routine mammogram in July 2008 I was diagnosed with DCIS. I had a mastectomy in Oct 2008 (I had that because my DCIS was quite widespread). I was told they had found a small (10mm) grade 2 tumour developing but it was successfully removed and I didn’t have any cancer in my lymph nodes so I didn’t need any further treatment. The cancer was oestrogen receptive so I was given Tamoxifen because I had a slightly higher chance than average of developing cancer in the other breast. I had bad side effects from the Tamoxifen and my consultant advised me to come off it because the protection I was getting was not worth the side effects I was having. I just have annual checks/mammograms now.
As I understand it, DCIS cannot spread to the other breast (someone correct me please if I am wrong). The mastectomy clears all the DCIS. You may develop cancer in the other breast but if you are the same as me then your risk of this happening is only slightly more than the average woman.
At my last appointment I actually asked my consultant if I should have another mastectomy in view of the fact I can’t tolerate Tamoxifen. He told me he didn’t think my chance of developing it in the other breast was enough to warrant another mastectomy. At the time I got my results (a week after my op) he actually told me I am “cured”.
I hope this makes sense!
Love
Maude xx
Hi
Like you I had DCIS last year; MX wasn’t mentioned for me (to my relief). I had 2.3cm of intermediate DCIS removed followed by 3 weeks rads as it was felt without I would possibly be at a higher risk of recurrance.
Anyway about the time of my rads a report was issued on the effectiveness of Tamoxifen for DCIS. I can’t for the life of me remember what it was called but I think it did suggest a slightly higher protection for your other boob but not that much.
Tamoxifen is only registered for BC treatment not prevention so until it is they only use it for invasive BC as far as I understand it. The results of the study are now being considered & if in the future it is licensed for prevention rather than treatment it may be an option in relevant cases.
Hope this helps
Lynne
hi , i too was diagnosed with dcis after a routine mammogram in may last yr, after core biopsy results came through i was upgraded to dcis with invasive . i had a wire guided wle followed by another wle to get clear margins, i had 17 radiotherapy sesssions, 15 to the whole breast and 2 boosters to the scar. i was stage 1 grade 2 no lymph gland involvement, er possitive, i asked for a mastectomy when diagnosed, i just wanted rid of it at all costs… i was refused as my consultant said a wle should be enough to clear the problem , i was also put on tamoxifen, the side effects were dreadfull, my oncologist changed them to aromasin and since then ive been fine. tamoxifen is prescribed for hormone possitive bc i dont think you get it if you have had a mastectomy
i thought tomaxifan was only used if the cancer was hormone posative?? I have only had a lumpectomy and my nodes were clear, but because my cancer is invasive hormone posative cancer then I am going on tamoxifan to stop it developing anywhere else in the body.
or have i got it wrong
no oldandlumpy you got it rite, the cancer i had was ER possitive also invasive so i was on tamoxifen, i suffered horrid side effects and it was changed by my onc to aromasin, both do the same thing,
i am going to have to endure side effects, mine is also PR+ and tomaxifan works better on that type than the other drugs. Apparantly if i stick it for 2 year I get the benefit and then i can change.
plus the tomaxifan will built up by bones ready for other drugs to thin them–i have got osteoporosis already.
Hi
Thanks for the response. I don’t know if my tissued was tested to see if it was hormone posative? Does anyone know if I can still find out?
Hi
Susie you’ll need to see your Path report or contact your BCN as she should be able to find out if your tissue was checked to see if hormone positive.
I asked my Onc in March; & was told they don’t have this test done for DCIS if they are sure there is no invasive.
Take care
Lynne
Hi,
I had mx for widespread DCIS Jan 2009 lymph nodes clear and no further treatment the hospital I was under said I would have checkup and mammo on other breast yearly for five years, have since moved to different part of country and the hospital where I now live have discharged me from the Breast Care Clinic as no further treatment was needed and will have follow up mammo’s every 18th months untill 6 years and then back into normal routine mammo’s, so I do think different hospitals have varying guidelines.
Maggie.
If the DCIS is low or medium grade and surgery managed to remove all of it, then tamoxifen is often not offered. This is because the side effects of tamoxifen are worse than the risk of the DCIS returning. DCIS is a very treatable condition, providing the tumour(s) are removed surgically. Follow up radiotherapy is offered for younger women or for those who had widespread or high grade DCIS. Low or medium grade with a small tumour is often cured by surgery alone, either wide local excision or mastectomy. Tamoxifen is an extremely useful drug, but also has side effects, so the oncologists weigh up whether the risk of the DCIS returning is greater than the risk of the side effects of tamoxifen. If the answer is no, then tamoxifen is not given.
Hi
This is my first time on here, I was diagnosed with Dcis after recall from mammogram I had a core biopsey and following the results I had a wle 3 wires inserted first, which took 3 hours,following the results of this I was told I had to have a mx I was offered imediate reconstruction with an implant which is what I had, On a visit to see the bc nurse 10 days later, I saw the BS by chance he called me in to say I have good news you dont need any more treatment every thing was fine.He said he will do a nipple reconstruction and lift the good breast, has anyone had this done? I would like the result but dont fancy surgery again, with clothes on I look fine but without I can’t even look in the mirror.
Hi Camper
I had DCIS and it was treated with Mx with strattice reconstruction and then had the other boob augmented with an implant to match it in size - fantastic result! I am havingmy nipple recon on 8th August (almost 1 year after my initial diagnosis)and then I will finally be done.
It has been a long road but cosmetically the results are really good. It is worth it in the end, IMO. ALso it is about how YOU feel and if you don’t like what you see in your mirror, then have the surgery - it will boost your self esteem no end.
StellaG x
Hi Stella,
I am 2 weeks down the road from the same recon also for DCIS but only on one side. Can you tell me if it softened up at all, it is such a rock at the moment. I do agree though, it looks really good(a bit bumpy on the top, did you have this and did it change?).
PS Just seen the BS in follow up and my path report says there was a tiny bit of invasive cancer and also some High grade DCIS alongside the Intermediate we already knew about.The invasive was 1.5 mm grade 2! 1.5mm amazing they found it at all.
However, because it is ER and PR receptive they have recommended Tamoxifen which I am very loath to take as I am not conviced it gives me that much protection and when weighed up with side affects…
Any studies anyone?
I would still like to hear if anyone is taking Tamoxifen to help stop reacurrance in the other breast. Also had anyone done research on the different grades of DCIS? and what it all means in relation to invasive BC. Am I right in thinking that not many people use the forums to chat about DCIS?
Hi Stella,
Thanks for replying was it your choice to wait a year? I had my mx 7 weeks ago and was hoping the nipple recon would be done at the end of 4months, do you know when you are allowed to play sport?
re suzie’s comment when BS told me I needed a MX I asked couldn’t you do something else he said no as it is not breast cancer.
Hi Camper
I did a lot of sport before I had my MX, I started the excerises that the BC nurses gave me when I came out of hospital. After about 4 months I went back on a squash court and stared knocking a ball but I am right handed and I had the mx on my left side. I think your body lets you know when you are ready to get back into it. Just take it easy and you will be ok. Some times I do to much in the gym and I find my scare pulls a little and my muscles around my arm get a bit stiff. Hope this helps.