Just diagnosed, and LOTS of questions

Michele, I see many women on these boards totally against radiation, but for others, like me, it was a great experience. I did not have any major issues, my skin suntanned beautifully from the radiation. I also believe the radiation gave me extra protection. When my cancer metastasized, it was nowhere in the area where I was radiated (left chest area).

Personally I would pass on a lymph node biopsy. I had a clear sentinel node biopsy but had mets later. I didn't know at the time that the biopsy has a very low rate of predictive success. The reason I would pass on it though is because of complications that could develop.

One of my treatments has been Tamoxifen (not a preventive, a treatment). It helped my cancer stay stable for a couple of years, so I know it worked for me. No major side effects and I'm prone to them. You can try it, and see how it goes. You're not required by law to take it, no matter how pushy your oncologist may seem. ;-)

Wishing you the very best.

Radiation - I had ZERO skin issues. Some fatigue, but more that I had to go to bed an hour earlier than usual, not that kept me from functioning. I work part time and have two kids who needed to be schlepped everywhere and I was able to do it all. The only other issue I had was some swelling in my breast.

Tamoxifen - I've been on it for 3+ years now and find it very doable. The side effects I've experienced are hot flashes (manageable but annoying), leg cramps (magnesium and staying hydrated helps), some hair thinning which is noticeable only to me, brittle nails, and an annoying vaginal discharge. The discharge is pretty much all the time, the other things vary (show up every few months), except that the hot flashes have been pretty consistent once the outside temperature warmed up for the summer. On the plus side, I am perimenopausal and had been having frequent, heavy periods with lots of breast tenderness before being diagnosed (I was 45 at diagnosis, 49 now). The breast tenderness went away immediately, and my periods got lighter and less frequent, all of which are huge pluses to add to the benefit of protecting against more cancer. The thing with Tamoxifen is that most of the more common, “quality of life” side effects will go away if you stop the drug, so you can always try it and quit if it becomes unbearable.

Good luck!

Edited to add after re-reading your post - while technically Tamoxifen is still the only approved anti-hormonal for post-menopausal women with DCIS, new research has led many oncologists to be willing to prescribe AI’s “off label” for DCIS patients. I suspect official recommendations will be changing to allow it very soon. Supposedly many people feel less side effects from the AI’s, but I don’t know if that is really true - I seem to hear just as many complaints, LOL. One benefit to Tamoxifen over the AI’s is that Tamoxifen enhances bone strength, while AI’s can contribute to osteoporosis. They do do a better job of blocking estrogen better so the anti-cancer effect is stronger.

Also, about the sentinel node biopsy. Since you are not having a mastectomy, I don’t see any reason to have one as in the unlikely (but possible) event, they discover some invasive cancer lurking on the edges of your DCIS, they could always go back and do it then. If your diagnosis remains pure DCIS there is no need to check nodes as by definition the cancer could not have broken out of the ducts and traveled to the lymph nodes. SNB carries with it a lifelong risk (small but real) of lymphedema so shouldn’t be taken as lightly as some doctors appear to. Plus, I know from experience that it is much more painful than the lumpectomy incision so why put yourself through that unnecessarily?

I'm 35 and have been taking tamoxifen for 8 months.  In the beginning I was having trouble sleeping, but I had some stress at work too.  I get tired, but am not sure if that's just everything put together.  I haven't had bad side effects with the meds. 

Good luck!

Hi-

I didn't have any problems with radiation. I got more tired toward the end but that was it. I have been on Tamoxifen for one year and haven't had any major side effects. I got hot flashed in the beginning but then they subsided and I only get them occasionally now. I am also perimenopausal so the hot flashes could have happened any way! Good luck with your decisions.

Hi HHandBasket:

". . . I read in Beesie's great article that AIs are not currently an option for post-menopausal broads with DCIS."

Although not FDA-approved in the DCIS setting, aromatase inhibitors have been added to the NCCN guidelines for treatment of breast cancer (Version 2.2016) as an option for post-menopausal DCIS patients, based on recent results from the NSABP B-35 and IBIS-II trials***, along with the comment "with some advantage for aromatase inhibitor therapy in patients <60 years old or with concerns for thromboembolism."

I believe you misunderstood Beesie's post, which notes the recent inclusion of AIs in the NCCN guidelines in the DCIS setting (emphasis in original):

"UPDATED - Tamoxifen is currently the only endocrine therapy approved for women who've had DCIS. For women with invasive cancer, while Tamoxifen is given to pre-menopausal women, post-menopausal women often are prescribed an Aromatase Inhibitor (either Arimidex or Aromasin or Femara). Aromatase Inhibitors (AIs) are not yet approved for women who've had DCIS. Recent studies have however shown that the AIs may be more effective than Tamoxifen at reducing recurrence. Based on this, and in anticipation of the approval of AIs for women with DCIS, the 2016 NCCN Guidelines now indicate that post-menopausal women with DCIS may choose to take either Tamoxifen or an AI. The guidelines note that there may be some advantage for aromatase inhibitor therapy in patients <60 years old or those who have concerns about thromboembolism."

Thus, post-menopausal patients now have the option of tamoxifen or an aromatase inhibitor, both of which are within the NCCN guidelines for post-menopausal patients with DCIS (although only tamoxifen is FDA-approved for this use).

BarredOwl

***Regarding the additional option of aromatase inhibitors for DCIS:

"Anastrozole versus tamoxifen in postmenopausal women with ductal carcinoma in situ undergoing lumpectomy plus radiotherapy (NSABP B-35): a randomised, double-blind, phase 3 clinical trial"

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01168-X/fulltext

"Anastrozole versus tamoxifen for the prevention of locoregional and contralateral breast cancer in postmenopausal women with locally excised ductal carcinoma in situ (IBIS-II DCIS): a double-blind, randomised controlled trial"

http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)01129-0.pdf