So Low Risk, no ovarian suppression? Really?

Removing ovaries in a pre-menopausal woman brings with it some significant side effects. Potentially higher cholesterol, osteoporosis, sexual dysfunction and vaginal atrophy, not to mention hot flashes, mood swings and depression.  Tamoxifen side effects potentially include the sexual and emotional ones as well. The reason Tamoxifen is prescribed to pre-meno women is that is blocks the estrogen from the cell receptors while still allowing estrogen to protect the bones and heart, and do all the other beneficial things estrogen does. I think it is safe to say that hormonal therapy certainly does benefit, but ovarian supression or removal might be overkill. Will your doc do a Tamoxifen metabolizing test to put your mind at ease - I know they are considered unreliable by some docs, but if the test shows you are metabolizing Tamoxifen well it might be helpful.

You, also, need to consider other family medical issues in addition to your breast cancer risk when pursuing this option.  If you have significant family history of heart disease and stroke, removing your ovaries will greatly increase that risk for you and, in doing so, may far out-weigh the risk of having a breast cancer recurrence.

i dont understand why some MO's do and some dont recommend some form of ovarian suppression.  In your case you are clearly low risk so the risk of ovary removal is probably greater than the benefit you would derive from it.  In my case being stage 2, grade 3 and her2 she did recommend lupron shots to shut down my ovaries - but my second opionion MO said it was not necessary because I am on tamox.  They both muttered something about on-going studies being inconclusive at this point.  I choose lupron because if i didnt like the SE's or studies show that it is not beneficial i can always stop the shots - ovary removal is permanent

We don't know the preliminary results yet. They're blinded. My contacts tell me that we should have preliminary data at the close of 2013.

The tamoxifen resistence test has been "dropped" by a number of oncologists due to its unreliability in accurately predicting whether- or not someone can adequately metabolise tamoxifen.  Earlier hype about the test didn't really pan out to consistent results which is why it fallen somewhat out-of-favour.

msShelly now is NOT the time to worry about pissing off docs. It's your life. Literally. If you're not thrilled with what this doc is telling you, go get a second opinion from another onc. If it pisses this guy off, then sc**w him. It's not his life. He'll go home at the end of the day. You'll still have had cancer.

The worst dr I had in this mess was a highly regarded Boston onc at a highly regarded Boston hospital. My local onc is soooo much better. Just because someone gets a cushy appointment at a great hospital doesn't necessarily mean they're the best. Maybe they just kiss the right butts. Maybe they married into the right family. Who knows? Maybe this guy is fabulous for all his other patients. The bottom line for you is that he's not listening to you and certainly is not explaining things well enough. Nor does he seem to be following NCCN protocols.

edit to add: I think ovary removal is overkill. Just my opinion. But I do feel that with a 1cm tumor, you should at least be offered tamoxifen.

msShelly - i started my lupron AFTER my periods came back...I was in chemopause for 14 months and then the periods came back with a vengence.  So obviously my estrogen kicked in again and apparently the chemo did not fry my ovaries as i thought it would! You did not do chemo so this was not an issue.  I would think in your case tamox would be enough but get a second or even third opinion  - I got one from Dana Farber and she did not recommend ovarian suppression either.  Interestingly my MO, who is kind of old school, did.  Once the results of the SOFT study come out I will make a decision on permanent removal.  My MO's (all 3 opinions) told me that the tamox metabolizer test was also not reliable but i see here some ppl have had it done

I think it would be helpful to get another opinion from your gyenocologist. I had conflicting opinions from my MO and my obgyn until they spoke together and discussed my particular situation (realize my situation and yours differ). After that meeting, my MO was on board, and even insistent that my Prophalactic hysterectomy be done sooner than it was scheduled for.

It was stressful having one say "not necessary" and another say "absolutely in your best interest" (my obgyn is my aunt). So, having them discuss it together was beyond helpful for ME.

msShelly...as others have posted, if you aren't happy then get a second opinion. It's your body, your decision and you need to be your own advocate.



Other than the bmx, I've had nothing, not even on tamoxifen and I'm 41 and def premenopausal. Heck, I don't even meet with an oncologist once a year. Never had the oncotype test done. Do I sometimes feel like I've been left blowing in the wind? You bet.



The onc I met said, in my situation, everyone's is different, that the slight benefit of tamoxifen wasn't enough to warrant the risks. The same with removing my ovaries. That can bring on a host of new issues that others have mentioned. I have a strong family history of stroke, heart disease, diabetes.



I brought up my concerns at my recent appt with my breast surgeon, I'll have an appt once a year for five years. Again, the statistics were thrown at me and said that my treatment, or lack thereof, was quite typical. They both said I was doing everything I should. I've lost almost 40 pounds, am exercising everyday and trying to eat right.



Do I still wonder? Of course I do and probably always will. But I can't live in the what if. Gotta live in the now.

msshelly - to my knowledge pure DCIS with no invasive component is not treated with Herceptin.  Herceptin works in tandem with chemo, it is difficult to find an onc who uses it without chemo for invasive tumors unless the Her2+ patient has comorbidities that preclude chemo. Chemo is not used for pure DCIS regardless of the hormonal or Her2 status.  The Her2 status of pure DCIS is not well understood at this point, and even the use of hormonal therapy for pure DCIS is inconsistent.  In terms of how frequently you are seeing your onc, twice yearly for a patient who is only on hormonal therapy and has not received chemo sounds correct.  I did have chemo and Herceptin and saw mine quarterly for that first year, but I have now moved to twice yearly as well.  I also receive Prolia injections and have my port flushed at my center, but do not actually see him for either - this is handled by the nursing staff at separate appointments from the ones where I see the doc.

msshelly - Do you have the capability to email questions to your oncologist?  I know that some do - or even schedule a question and answer appointment to set your mind at ease?  I always found that writing down my questions as I thought of them helped - then I went in with a list.  It became a running joke with my onc - no appointment was complete unless I got out my list and we went through it, lol! FYI - here is a section of Beesie's very informative DCIS post specifically regarding Her2+ DCIS:

- At this time, based on current medical knowledge, there is no relevance to HER2 status for those who have pure DCIS.While HER2+ invasive breast cancer is known to be very aggressive, there is little understanding of what HER2+ status means for those with DCIS. Several small studies have been undertaken to determine how HER2+ DCIS differs from HER2- DCIS; the results of some of the studies have shown that HER2+ DCIS might be more aggressive but the results of other studies have shown the opposite. So there's no clear answer yet. There also are no special/different treatments for those who have HER2+ DCIS, although several clinical trials currently underway. What is known is that a large percentage of DCIS is HER2+ (a much higher percentage than for IDC) which may suggest that as DCIS evolves to become invasive, in some cases HER2 overexpression might decrease, with the cancer changing from being HER2+ (as DCIS) to HER2- (as IDC). HER2+ DCIS is an evolving area, so stay tuned. But for now, don't worry if your DCIS wasn't tested for HER2 status - some doctors/hospitals do this testing, others don't.

Southport... I spoke to one of the SOFT trial researchers and was told that because the study is blinded, not even they have any information. She said the preliminary period will end in September. At that point the data will be sorted and then most likely announced at the 2013 San Antonio Breast Cancer Symposium. There is no indication whatsoever what the data might show because it hasn't even been collected yet. I agree that the trial has been extremely quiet with no leaks. The only good news so far is that they met the targeted number of participants. So, going forward they will probably have enough data to meet statistical significance if there is a difference.

VR - Interesting about the SOFT Trial, thanks.  I wonder... if there is a significant survival advantage to the ovarian suppression, will it be recommended that we all suppress our ovaries?  Even years after our diagnosis?  At next years SABCS, I will be 5 years out but still pre-menopausal.  They still probably won't know what to recommend to someone in that situation.  I feel frustrated that I've often been just "behind" research news and unable to take advantage of new findings.  But...at least I'm still here!

Selena... Me too!