Help....Looking for Input/Answers

If the chemotherapy would give you ANY benefit, I would do it.  You have 3 young children.  

 Also, wasn't there some disagreement about whether your cancer was grade 2 or 3?  And, what does "not necessarily need chemo mean"?  It doesn't sound like that oncologist is recommending against chemotherapy.

I know you are worried about what to tell your older children.  If you are really worried about losing your hair, go out and buy a good wig, even a custom made human hair wig.  If your hair is long, I would start out by getting a short style, then match the wig to that style.  Then, you could play it by ear as far as what to tell your older children, though I would refrain from telling them anything that would make them think you are in danger.  The likelihood is that you will survive, so no need to overstate things.  Your children are at the age when they will be forming their first long term memories, so I would just keep things as routine as possible.  If, God forbid, you would need to say anything further, it would be so far in the future from a child's perspective that there is no need to even mention all the possibilities that come with a cancer diagnosis.

 And, just think, if you had started chemo two weeks ago and were having your infusions 2 weeks apart, you would be half way through your treatment today.  4 DD Ac treatments will be over before you know it.  

That is my perspective.  My own mother died of cancer.  She had several precancerous conditions removed before being diagnosed with invasive cancer in the 1970s.  She waited to see a doctor for many many months, had no follow-up treatment, not even radiation (despite large tumors).  She lived a long time considering (15 years), but she still died of breast cancer.  She had a great response to chemotherapy, but if you wait 10 years after diagnosis it really is not as effective.  I am older than you, but still have a young child.   There was never a question for me.  I basically said I want to absolutely maximize my chances for long term disease free survival.  If chemotherapy will improve your odds for long term disease free survival, I would do it.

mje, I can totally understand your frustration. What makes it really hard is the Onc's really don't know if chemo will help those of us in the gray zone. I was told by 2 Dr's chemo is the norm in our situations. I think if I was you I would look at myself and try to decide how I would feel if the cancer came back, and I hadn't done chemo. There really isn't a right or wrong answer, just what is right for you and only you, and only you can decide that.

If I remember poptart is correct there was some disagreement on if it was grade 2 or 3. Did you ever have another patholigy departemnt look at it and give some input? That would be something to keep in mind when making the decision of chemo or not.

mje123 -

I think what you are now asking us is could ovarian supression trump chemo for those in the gray area?  The SOFT trial is trying to answer that question.

http://www.cancernetwork.com/display/article/10165/1366725

I think a third medical oncologist opinion is in order and another pathology review, perhaps at MD Anderson or Johns Hopkins can help as well.

Good luck.

My opinion is not going to be based on outcome, because I don't know the statistics for you.

However, having been through chemo and now taking tamoxifen, I would do the chemo.  Tamoxifen (for me) is way harder than chemo. Shorter duration and less pain.

They will never cut my ovaries out unless they, too, end up cancerous.  At least in five years I can be off this infernal drug.  If I take the ovaries out I'm trapped like that forever.

Now, keep in mind, not everybody has the problems I do with it.  But, those that do have real problems.   I would never let them touch my ovaries until I at least tried tamox to see how I reacted.  (The SEs, according to my onc, are the same).

 /jmo

mje123, I can understand your frustration. My path report changed from a 2 to a 1. In my case I did the first chemo treatment 2 months ago, and am still trying to heal from the effects. I've been told by my BS no way does he want me to do any more chemo. When we are in the gray area it's just so hard to decide.

My biopsy was a 2 my lumpectomy came back as a 1. I trust that one more it was done a moffit, the other one was at a small town hospital lab. When I look at the SE we can get from the chemo it makes me think I shouldjus back off. I realize what I got was not expected by anyone, but since I had mammasite radiation before the chemo it might have been nice for the Onc. to at least mention radiation recall. The only SE I was told about were the usual, which I was fine with. I figured 2 months of those were worth the 2-3% improvment, but the unusual ones were not mentioned to me.

Mje ... Our diagnoses are very similar ... the only difference is that I was 51 at the time of diagnosis.  I was told that chemo is always recommended for women under 50.  I felt that I had dodged a bullet.  I was terrified of chemo and didn't want to do it.  A close friend with the same diagnosis was 49 at the time diagnosed ... and chemo was recommended for her.  She chose not to have chemo.

Apparently age 50 is the cutoff for "standard of care" chemo for small Stage I tumors.

I wish you all the best in your decision.

Bren

mje, it seems to me that your oncotype score (and the report) gives you some idea of the benefit versus the risks of having chemo.  I decided against chemo based on my onctoype scores (16 and 8) because the benefits did not surpass the risks.   Chemo would have given me a 3 to 5 percent advantage, depending on the assumptions I made.  Assuming a 4% chance of permanent side effects, I decided chemo wasn't worth it.  

Many people say they want to do everything possible to treat their cancer; I say I want to do as little as possible.  The only way I know to go about that is to examine both the benefits and the risks of treatment.

I hope you can come to a decision you are comfortable with. 

mje123 - I'm happy that you're going to another center for a third opinion.  As I mentioned earlier, the pathology report is paramount to making an informed therapy decision.  Furthermore, from my own experience, I cannot stress enough importance on finding a physician who's experience you trust.  As you can see from my name, I am a voracious reader and left no stone unturned when I was deciding on a treatment plan.  Sure I went to pubmed and lurked on this and other boards.  Did I have a "correct" diagnosis. Check!  Did I consult with several "authorities"? Check!  Did I have the Oncotype DX screening? Check!  But even with all the research that I did, I STILL was unable to validate EXACTLY what treatment was appropriate for MY disease.  I even asked Lillie Shockney, over at the Johns Hopkins website what I should do and you know what she said?  She told me to trust the experience of the doctor whom I trusted the most and move on.

Do NOT get discouraged.  You are very fortunate that you are a physician and have the aptitude to, at the very least, understand the statistics involved and the ability to ask the "right" questions.  As a physician you are in a very good position, but at times, I'm sure, humbling position, which should ultimately make YOU a better physician, when you, one day, put this event behind you.  Trust your instincts.  I'm sure they will serve you well in making your decision!

Good luck on Friday and please let us know how you make out. 

mje, that's interesting b'cuz when my DH & I were able to sit down with a local pathologist who did the path from my first surgery, others in my family who are in medicine were rather incredulous.  One even said exactly what your onc said -- that pathologists never meet with patients.  So I guess it just depends on the pathologist and the institution.

As it turned out, when I eventually had my slides read elsewhere, they did not agree with a very key point the highly esteemed pathologist who had given us a couple of hours of his time had made and upon which my future tx would be based.  But, more importantly, they also found a glaring omission in my care up to that point.  So I am all in favor of multiple opinions, and agree with voraciousreader that sometimes it can be just to find a doc you're willing to trust with these potentially life altering decisions.       Deanna

mje, If I remember right yesterday you had your app't. Wondering how it went.