MIDDLE-AGED WOMEN 40-60ish

Chiluvr1228 - I agree with Elimar - talk to the assistant. But also consider talking to another oncologist. Their "job," to my mind, is to help you understand what's going on and help you get on board with the plan. You have what seems to be an adversarial relationship with your current oncologist - he may think that because you opted for a double-mastectomy for a small tumor that you are the type who would do ANYTHING and everything, which you apparently are not.

There are two things you're trying to do here: first, treat the cancer that was found, and then second, prevent more. Surgery treats what you have - bigger surgery does not guarantee that you can skip other treatments aimed at protecting against recurrence or mets, which is the part of cancer that's dangerous. Radiation kind of does BOTH. That one little node signifies that the cancer successfully made an attempt to leave the breast and set up shop elsewhere. It might be what is causing a recommendation for radiation. Also, even with a bigger surgery, if you didn't have good margins because of where your tumor was located, you might need radiation (I had a lumpectomy, but I would've likely had to have radiation anyway, due to where my tumor was - tucked high up between skin and chest muscle - no good margins possible) to prevent a recurrence if any little cells happened to be missed. Doctors can't really get every little bit of the tissue - breast tissue goes all the way up to the clavicle and down and under the arms and even sometimes down to the waist. At least 5% of it is said to be left after even a really skillful double mastectomy. In addition, there's at least one woman I've heard of (on the ILC forum) who had a recurrence of ILC in the SKIN in the area where her tumor had been removed. So THAT is what you'd be having radiated. It's important to understand WHY they are suggesting it, so you can make a good decision.

The Oncotype of 9 helpfully takes chemo off the table (I had an 11), but some women still choose to do it. I didn't - it wasn't really offered, although my oncologist sat down and explained to me what the possible benefit would have been if I did do it. The small benefit wouldn't have outweighed the side effects, in my case. 

The other thing it might be good to do is some reading - like Dr. Susan Love's The Breast Book. Doctors don't get a "bonus" or anything on the number of procedures they "trick" you into having. The Breast Book is written by a very less-is-more doctor, and it has great discussions of the WHY'S behind all of these treatments. Understanding what you're dealing with and/or having a great relationship with an oncologist you trust is essential. All of this stuff is a big pain in the butt - the best we can do is learn what we can and buy in to whatever treatment protocol we're implementing. 

Good luck with all of this! 

glad you returned from the mothership claire!   did you get pictures?  it was too crowded in the bag to see if they gave you any

Elimar, I love the dog pic, and I have looked at it often to get a much needed laugh. That being said, Claire has blown you outta the water. That pic is crazy hot! And glad you're doing well!

I met w/my oncologist last week, but he didn't say anything about an oncotype, he just said recurrence %. Those aren't the same are they? He just said chemo was needed, rads were not.

chiluvr, w/a nickname like that, Dr. Doom, who would blame you!

chilurv1228- pm me with who is dr doom?  just in case we share the same doctor!!

 I love the dog picture. I just had to share this one. The original caption is "Please spay and neuter your pets! This is a tragic example of an in-bread dog!

Janis - Hooray - you're in the radiation home stretch. I'm sorry you having so much pain. Do you have a recliner? You may be more comfortable sleeping on one until your skin starts healing. You can expose the skin to the air and there's no chance of rolling over.

I hope you start feeling better soon Janis.

My tamoxifen is waiting at the pharmacy for me. Now I have to force myself to go pick it up. Why do I dread taking this so much? I cried all the way home from the MO....

Barb - It is kinda scary in the beginning but look at it as an added insurance policy against recurrance.  Jump over to the Bottle O' Tamoxifen thread - the girls are fanatastic and will help you along.  I did a split dose in the beginning since I had stomach issues with 2 of the AIs.  I got tired of doing that so one Saturday morning I decided to take the plunge and took the whole thing with a small glass of milk and I don't have any problems.  

Barb58 I know how you feel.  I was freaked out more on the Tamoxifen then I did for the chemo.  I stared at that bottle for days.  I had so many visions running thru my head that I was beside myself.  I finally did it and it is mind over matter from there.  I did split the pill in the begining, but after awhile I took the whole pill.  I have been on it for 3 months now and the only major SE I have had is hot flashes.  They have decreased but I still get them pretty bad somedays.  Good Luck and jump on over to the tamoxifen thread, the gals are great over there. 

No boost today, machine broke.  So I get a day off.  They rescheduled me for later tomorrow...noon.  After rads I have to see my RO.  Then I have to be at the hospital a good 20 minutes away for my thyroid node biopsy.  I'll be rushing tomorrow afternoon.

Thanks everyone for the well wishes!  I am sore but braless at least.  Not leaving the house again until tomorrow! 

janis will be thinking about you tomorrow.  Hope you don't get too rushed.

Kay I do think they need to get on the same page.  My MO wanted me to start tamox during rads but my RO did not want me to start until 2 weeks after rads.  His reasoning was if I had a reaction in the form of a rash they would not know which had caused it.  So MO said OK to that.

Kleenex - My MRI showed I had 2 cancerous spots on my left breast and something my BS wasn't sure about. According to my path report one was lobular and one was "invasive mammary carcinoma with mixed ductal and lobular features, Nottigham grade ll of lll" (which is all Greek to me)There was also something "suspicious" on the right one so that's why I chose the DMX. Turned out the suspicious growth on the right breast was not cancer but not sure after 2 lumpectomies on the left how much breast I would have left which is why I decided to go the route I did. I honestly thought that was all there was to it. My BS seemed pretty positive that nothing would be in the lymph nodes so I was really taken off guard when Dr. Doom told me what he did. Having a mastectomy didn't phase me much as I knew I was having reconstruction. If that wasn't an option I probably would have done the lumpectomies and maybe rads. I knew I would never do chemo.

Elimar - I did call Dr. Doom's office today to find out what exactly he planned to do radiation on. When I was called back by the PA she didn't see anything in my file that indicated I needed radiation or what his plan was. Told her I didn't like Dr. Doom and didn't feel like we were a good fit and that he was just throwing chemo, rads, hormone therapy at me for no good reason. When she called back she said that he agreed "perhaps I should use another one of the physicians in their group". I didn't know whether to laugh or get angry. When he told me if my cancer came back because I didn't do chemo IT WOULD BE FATAL I told my wonderful BS what he said and she was shocked that he told me that and was going to talk to him about it. I'm sure that didn't help create a great doctor-patient relationship.

Diagnosis: 4/29/2011, ILC, 1cm, Stage IIa, Grade 2, 1/7 nodes, ER+, HER2-