My Treatment

Hi, Sammy - you have a little bit of time to ask questions. I would consider getting a second opinion - even having another oncologist recommend the same thing without using the phrase "kill your ovaries" would likely help. On the good side, you may find other recommendations that sit better with you. The worst you can end up with, really, is a confirmation of what the initial oncologist suggested. There might be another way. There are very few absolutes in this fight, and it is important that you are informed and also that you are on board with what the oncologist is recommending.

My original oncologist had very different recommendations than the one I ended up going with. He was going to recommend chemo or not based solely on tumor size, example, and never mentioned the oncotype DX test. Also, he wanted to shut down my ovaries with Lupron. I'm taking Tamoxifen, and my current oncologist thinks that's enough.

Good luck to you!

Coleen

Sammy, absolutely get another opinion. My first onc was hot on the ovary shut-down idea. I have a new onc now, and she is not recommending either chemical or surgical menopause. In fact, she was glad my period came back after chemo--she feels the more the body is functioning normally, the better. I was 38 (almost 39) at diagnosis, and am 41 now. My tumor was moderately ER/PR positive.

Shelley ~  You can always take your second or even third opinions back to the onc you have now.  Getting a second opinion doesn't mean you have to go with that onc, and I think most caring, thinking oncs are happy to have input from other oncs to consider.  Unfortunately, oncology is not always a  black or white type of call, and since you may be the one making the final decision, I think it's best to get as much information as you can, so that you can challenge opinions and be sure you get what you are comfortable with.  

I also wanted to mention that one reason I highly recommend NCI-designated cancer centers -- aside from my own experience, which happened because of my sister's (who is in the field) insistence that they're the best -- is the fact that they see far more bc than most other facilities, so they have the experience to pick up on subtle differences between us and our bcs.  They are also on the cutting edge of treatment options and changes because this is where the research that drives those changes is being done.   Deanna

Sammy, don't feel bad for complaining.  If I were in your shoes, I'd be doing the same.  You didn't do anything to deserve breast cancer, and then to hear that the treatment involves not just removing your breast or part of it, but also to have to give up your sex hormones, is like a double whammy. 

I'd definitely get a second opinion because some oncs are more aggressive than others and you may find one who thinks the way that Nash's does.  At least then you'd have a choice about what type of approach you want to take.  And you can even get a 3rd opinion if you're torn between the first 2.  It's very common to do so in this situation.

Also, I know it's controversial, but you might ask if removing more nodes is necessary since you are going to have chemo anyway, which could possibly kill off the cancer in the nodes.  Having many lymph nodes removed puts you at higher risk of lymphedema.  If you go to the forum  on here called:  Chemotherapy, Before, During and After and click on the discussion titled  "Does chemo zap cancer in nodes", there is some interesting information on this subject.  Some of the women reported that their doctors agreed that removal of additional nodes was for staging purposes only, so not necessary if chemo was already planned.

Sammygrey - I'm in the DFW area, and it sounds like you are? My oncologists and breast surgeon are in Bedford, in the mid-cities area. PM me if you'd like a recommendation for a second opinion in this area...

Coleen

Sammy ~ Doing chemo 4.5 hrs. from home probably isn't ideal.  I had a similar situation because I am being treated @ UCLA, which is on the far west side of LA, and I live 3 hrs. away, near Palm Springs.  My UCLA onc strongly encouraged me to find an onc in my area that she would work with, which is what I did.  She said it was not a good idea to have chemo so far from home because if you have a problem, it's too far to get to them.  And if you show up at a local ER, no one will know your situation or have your records.  I think many oncs would feel the same way. 

Skipping chemo, even with a bilateral mast, I think would be a HUGE gamble with 2 positive nodes.  I fought doing chemo for weeks, but an 11-year survivor friend said the thing that helped her decide and made the most sense to me was the question, "If you didn't do chemo and it ever came back, how would you feel?"  And I knew I could never forgive myself for that kind of gamble.

Just some additional things to thing about ~   Deanna

Deanna, you and I were posting at the same time. You're right about the local ER, etc. Also wanted to add that it's more than just the chemo every 3 weeks or whatever--one has to go in to the cancer center every week for a blood draw to check CBC, and also to get Neupogen (which can be a shot a day for 3 days) or Neulasta. I also saw my onc for an appointment in between chemo rounds. So one ends up spending a lot of time at the cancer center aside from the actual chemo infusion itself, and proximity really does need to be the driver in the onc selection.

Sammy ~ I'm so glad you asked that question.  I'm seeing my BS @ UCLA tomorrow, and I will ask her about that.  I already had a question on my list for her about the possible benefit of thermography as a screening tool, and I've just added your question about Petscans & ILC to my list.  Perhaps someone will be along ASAP who knows the answer; if not, I'll let you know what she says.   Deanna

Nash - re: your comment about ILC being tamoxifen resistant....I was on tamoxifen for about 7 months and that cy....test said I was an intermediate receptor of it.  Are you saying that, with our type of cancer, tamox. isn't the drug of  choice?  I still have my insides intact - so - imagine my surprise at my annual gyno appt to find that tamox. had thickened my uterine lining and I needed to have a "giant" polyp (which might have been a fibroid - don't you just love when doctors are so nonchalant about things??) removed.  I'm now on aromasin.  6 surgical procedures in one year is a bit much.  Going to the onc. in October after 6 months - hoping all is well.  

Lene--check out the link to the info on Tamoxifen/ILC in my post above. Some studies are showing that some ILC (they don't know if it's all cases) seem to be Tamoxifen resistent due to an increased number of gamma receptors on the bc cells that block the Tamoxifen's effectiveness.

This research is very preliminary, and in no way should be construed to mean that ILC girls shouldn't take Tamoxifen. I am on Tamox, and there has not been any discussion by my onc of shutting down my ovaries so I can go on an AI.

But holey moley, sorry to hear that Tamoxifen gave you uterine thickening and big honkin' polyp after just 7 months on it! Were you having heavy bleeding or did the gyn figure this all out by pelvic exam? I just went for a pelvic u/s last week (ordered by my gyn and poo-pooed by my onc as unnecessary) to check for thickening, etc, so we shall see if anything's percolating in my innards as well. Hope the Aromasin agrees with you and that the next year will be more uneventful for you.

Nash, it's encouraging to hear that there are actually some Oncs out there who think like yours, and don't scare young women into ovary removal, with all its devastating side effects, as a way to fight breast cancer.  It bothers me tremendously that this is the best they can come up with for fighting breast cancer, taking away our hormones that help keep our bodies running properly, not to mention how important they are for our sex lives!  I'm hoping that they will soon come up with something that kills the cancer cells and not our hormones.

sammy,

for what it is worth- chemo can be ok--- I know everyone is different but my experience of 4 rounds of A/C after a lumpectomy Iwas that it was ok--I worked through almost all of it, I have two young children--- I am not saying it was easy, but it can be done..... and the best part for me was that once I decided to have chemo based on an oncotype score that was in the gray area, I never lost another minute's sleep----- it was the right decision for me and drove down my risk of recurrence to just about 8% or lower- which is pretty good.  It is hard to go through- but if you are essentially healthy and hopefully don't have a reaction to the drugs, you will get through it.... and believe it or not, it will recede from your memory before you know it.  I wish you well---- 

I agree with rgiuff-- my onc did not think an ooph was necessary--- I have monthly lupron shots to shut down my ovaries.

Carole