Chemo for DCIS

I had DCIS (9cm) in 2003 when I was first diagnosed and no chemo - I was 35.  I then was diagnosed with a new cancer in the other breast (not a secondary) in 2010 at age 42 and this time it was invasive ductal carcinoma so chemo was recommended.  I was happy to have the chemo the second time as I saw it as an insurance policy against the cancer coming back a third time!  Whether I would have benefited the first time?  I'm not sure....the doctor didn't think so.

I guess we have to have faith in our medical team's opinions but you also have to be happy in yourself as to the type of treatment that you are having.

Good luck with your decisions!

Louise :)

Hi Jen, I can't really say what gave me the final push for the double mastectomy, I did a lot of research online, talked with my surgeons (I'm in private) and in the end it just felt like it was the right option for me. Can say I have no regrets, I think I'm the type who would have a constant fear of recurrence in the back of my mind and felt mastectomy would take away this fear. I'm aware that it could reoccur elsewhere in the body but that's what the adjuvant treatments are for and am optimistic about the future. Just did not want to have cancer in my breasts ever again.  My plastic surgeon was okay with whatever I chose, and was quite happy to talk about different options with me (he used to be breast surgeon before plastic surg.). In the post-surgery appmt my breast surgeon said she could see that I was confident with my decision and well prepared prior surgery so that she felt no need to talk me out if it. She also admitted it was a smart choice after all because of the undetected DCIS in the left breast. I'm sorry your radiologist gives you such a hard time, it really does not help, at least your surgeon seems more humane. the way I feel is that no-one should push their own agendas on you, it's your boobs, your body and your choice. 

Counselling may not be such a bad idea, i was supposed to have a session too but in the end didnt have one, don't think it would've changed my decision and i think the purpose is more of making sure you fully understand your choice rather than to trying change your mind.

I wish you good luck, to whatever you choose to have done!!!   keep me posted - Annie        

Hi again, I can relate to what you say about avoiding chemo safely, and the 1-2% non reoccurance does not seem that significant. I just want to make the right treatment choices that I can live with and that's why question the recommendations by surgeons/oncologists but by no means question or critizise their expertise.

The reconstruction I had was a skin & nipple saving so there was no need for expanders, unless i wanted a bigger size for which they would've expanded the skin a bit first but I was quite happy with my own size. I was told this kind of surgery is possible in certain BC cases, such as mine.  I can only imagine what it feels like with expanders, and I hope it's not too bad for you. how long will you have them on? I assume the expanders were put under the chest muscles like my implants were? I feel pretty much numb around my chest area now and have some weird sensations at times but overall it's not too bad, or I could say it feels better than what I expected.  All the best!  Annie

ps. which city you're in? I'm in Sydney

Hi Jen, thank you for the information. Indeed, I seem to be a 'good candidate' for Tamoxifen as I'm strongly ER+. For some reason I see Tamoxifen as less harsh than chemo but admit I could be totally wrong..  My peer support  BC survivor however told me she had no side-effects none whatsoever from being on Tamoxifen for 5 yrs, but I guess everyone reacts differently. I might just get that 2nd opinion like you suggest.

Hi Anne, thank you for your reply, so good to hear from others in similar situations. I too had DCIS in the right breast and was initially recommended lumpectomy but after a lot of thinking and researching I myself asked for bilat mastectomy and immediate reconstruct (implants) too. Isn't that even freakier than just our names!!  I chose that option as I did not want to go through the same trip again if I was to be so unlucky and get breast cancer again in the future.. I don't regret my decision, my boobies now 2 weeks post surgery are already looking much like my own and I have no pain as such. But most of all, the pathologist unexpectedly found a small DCIS in the removed left breast tissue as well. My lymph nodes (had a sentinental biopsy) were clear though which was a relief..

It's interesting that your oncologist sees chemo unnecessary. My surgeon did not mention anything about the possibility of a dual hormone treatment, but was rather adamant about the chemo. I have researched the topic (tamoxifen & ovarian ablation) a bit recently and indeed it appears to be used as an alternative to chemo, espacially in ER+ and HER2- BC. I was on the borderline on HER2 and still waiting for the results of an additional test (FISH) to confirm the HER status. Damn it's hard to decide what to do. Of course one wants to do all one can to prevent recurrence but chemo is major stuff. But then again, I assume a sudden early menopause is not a fun ride either. My husband says chemo in my case is like 'a shot in the dark', they cannot really say whether it would prevent anything... The oncotype DX test sure is expensive, but might give the final say to chemo or no chemo..

Anyway, Ill keep you posted on what's to come. Wishing you all the best / Annie

Hi anniep, I also have DCIS and am still in the planning stage for treatment. The Tamoxifen is a hormone treatment that will make you menopausal and works against the oestrogen. Your DCIS must be oestrogen sensitive for them to recommend tamoxifen. It does reduce the risk of the disease coming back but has be taken daily for 5 years.

AnneMP is talking about the expensive Oncotype Dx used in USA. My specialist says it hasnt been around long enough to be reliable for DCIS and is better for invasive breast cancers, so he didnt recommend it.

Mine is oestrogen sensitive too but my sisters have both had triple negative breast cancer and I have been told tamoxifen won't prevent that.

Good luck with your choices its hard to know what to do. Get a second opinion if your aren't sure.