Topic: MIDDLE-AGED WOMEN 40-60ish

Apr 28, 2012 08:01 PM Sherryc wrote:

Dianarose My onco score was a 23 with a 14% recurrence rate.  Chemo would have only benefited me 3% and my MO did not feel it was worth it unless it would benefit me at least 5%.  I had two opinions and both said the same.  However my MO did  say it tumor had been 2cm or if my KI67 had been over 10% he would have recommended it no matter what the onco score was.  I was a little leery of not doing it with such a high score but I am now doing Zometa every 6 months for three years which is suppose to lower recurrence rate alot for pre menopausal early state BC.  MO has been following the study and when it was present in Dec he felt I was a great candidate.  I have done one infusion and no SE's

Lisamarie so glad your home but hate that you had so many problems with the morphine.  I think I stayed in a morphine coma while I was in the hospital.  but that is OK sure beets feeling the pain.

Apr 28, 2012 08:50 PM Sherryc wrote:

diana the KI67 should be on your path report.  You will not find it on the oncoscore.  And yes I have lost 25 pounds with diet and exercise.  I eat alot less meat and more veges and whole grains.  When I was diag I asked all my Dr's what I could do to help not get cancer again and they all said the most important thngs was exercise and the next was good nutrition. I have also tried to go cleaner with all my personal products.  As I have had to replace things I have gone with paraben and sulfate free products. I'll check out the website I am always in to reading new things.

Apr 30, 2012 07:37 AM, edited Apr 30, 2012 07:38 AM by Dianarose

Have an appointment with my MO this morning so I got up early to go over things and write down all my questions. I pulled out my last path report that I was given and was told it was the report from the mastectomy. I had put it away with all the other crap because it was ugly and I didn't want to deal with it. Well, I noticed some things that were just not right. It said the specimen was collected on 3/15 which was my lumpectomy date. It also said the specimen was from lumpectomy. The date completed said 4/15 (mastectomy was 4/11). I thought is was weird that the sizes, grades, etc... were exactly like the lumpectomy report, so it is one of two things. Either they gave me the wrong report and I got an ammendend lumpectomy path report, or they sent out the tissue from my lumpectomy and not the mastectomy. Either way I am really upset this morning. When I asked the BS for a copy of the last path report she is the one who handed it to the office help to make a copy. Now I wish I hadn't shoved it in the desk drawer and found this mistake earlier.

I want off this roller coaster !!!!!!!!!!!!!!!!!!

Apr 30, 2012 08:11 AM Dianarose wrote:

I am almost certain I have the wrong report because they told me there was a total of 17 positive nodes and all I can come up with is 4. Also she said there was a brief paragraph about the left side having no cancer and I can't find that either. I am just tired of mistakes. There have been way too many with me. You have to be on top of everything and read everything a thousand times. It's hard when you are already an emotional basket case.

Apr 30, 2012 08:23 AM Dianarose wrote:

I am stressed enough not knowing what the plan is going to be with an Oncotype score of 6. I know I have a lot of postive nodes, but I just can't see how chemo is going to make a difference when it's the same cancer.  I am getting a dam headache.

Apr 30, 2012 09:04 AM Dianarose wrote:

Meece- it is dam scary. The first surgeon I went to had me scheduled for a left breast lumpectomy in January. It was the right breast and he had done a lumpectomy on the left breast over 7 yrs ago. I found a new surgeon.

Apr 30, 2012 10:21 AM 2FriedEggs wrote:

Dianarose-thats crazy about the surgeon scheduling you for the left breast again. Glad you found a new surgeon. Kind of reminds me  of years ago when my obgyn did my hysterectomy .  About  two years later when I went in for a yearly exam he ask me " when is the last time you had your period." I told him "I haven't had one since you took out my uterus!" He seemed a little embarrassed lol. But let us know what happens today with your reports. We'll be thinking about you.

Apr 30, 2012 02:51 PM prayrv wrote:

Hey Colleen

Nice to see you again.  Hope all is well.

Hugs,

Trish

Apr 30, 2012 07:47 PM, edited Apr 30, 2012 07:48 PM by Dianarose

Had my appointment with the MO today and it really sucked. They had given me the wrong path report and he gave me the right one today. Now I went from stage IIIa to IIIc. He basically said he has to offer me chemo but based on the onco score the only thing he would probably be giving me is side effects. He also said that based on the nodes I probably have some undetected mets somewhere. I felt like he was just writing me off. So based on what he said it would be radiation, ovaries out, hormonals, and he won't write the script for Metformin, but instead wants to put me in the trial. I don't want a GD placibo based on my path report. I think I am going to get a refferal to Dana Farber. He is going to see if I can get in the trial for the BC Vaccine, but said I might not qualify because I didn't have clean margins. It has not been a good day at all. I am so depressed.

I am having a hard time accepting all of this. What really sucks is I feel great and he basically made me feel like he was giving me a death sentense. How are we supposed to stay so positive when the doctors aren't.

Apr 30, 2012 08:50 PM Dianarose wrote:

Elimar- he also said that before the Oncotype test everyones treatments were based on stage. Now that they have another tool they don't know what to do for those who get little or no benefit from chemo. So many women have had and continue to go through chemo for not. It is sad. I just wish they had something in it's place. The nodes are really a double edge sword. With clear nodes you feel safer that you don't have mets. With positive nodes you are scared that they didn't stop there and at the same time you are glad that your nodes did their job. It's all a mind game.

I am going to call my reg doc and get a referral to Dana Farber. One thing that made me nervous with this MO is that he is head of the clinical trials for the hospital and I am the one who told him about the trial with the vaccine. He had to leave the room and go look it up. One of the other trials he showed me I didn't even qualify for and he was telling me about different drug options and then said that most of them are only available in Austrailia, well Why tell me about them.

Apr 30, 2012 10:49 PM Paula66 wrote:

Diana I do hope you get a 2nd opinion. 

May 1, 2012 07:34 AM lisamarie68 wrote:

I love ya dianarose ... on my way to PS today hoping my drains come out . I am still in so much pain cannot take it anymore :(

May 1, 2012 09:23 AM madpeacock wrote:

Was away for the weekend and then crazy busy yesterday, so trying to catch up...

Lisamarie - hope you have a better PS appt today and get those blankety-blank drains out! 

Dianarose - Sigh. I just don't have words. Your onc would make me crazy. I second (or third?) getting a second opinion - if not at Farber, then somewhere local outside of the group you are seeing now. There are so many GOOD doctors out there who are willing to fight for you that it is unreasonable to keep seeing someone who doesn't care about you. I wish you were here in GA so I could refer you to mine. She's SO good...

cmblastic - I need my shades for your dazzling teeth! 

Talking about medical record errors - I'm a transcriptionist, and I hear the docs change things midstream all the time - left vs right, etc. I'll get through a report and they'll say "Please go back and change everything to LEFT instead of RIGHT." Since I transcribe pediatric neurosurgery, sometimes they change boys to girls (he to she) and with the funky names these days, I have no clue, so I have to flag it and have the office doublecheck.  One of my docs yawns a LOT during his dictation and does not repeat what he said during the yawn, so he gets flagged quite often...

May 1, 2012 09:30 AM cmbear wrote:

dianarose--I am so sorry that you are going thru this mess. You should definitely seek a second opinion. I can't believe a doc would say that chemo would do nothing for you but give you side effects. I had ILC and 6 months of chemo knocked a 8 cm tumor to NED. Lord knows what it did to any nasty "floaters" in my body. I know its different for each and every person, but I don't regret my chemo. Seek and learn all your options.

lisamarie--yearh for the drains out--boo for the pain. Hope your doc figures it out. And at least getting the drains out will make you feel worlds better!

May 1, 2012 09:46 AM madpeacock wrote:

Hi dechi (waving)!

Well, we won't even go into the urologist I used to transcribe that dictated in the bathroom - complete with grunting - and then flushing sounds. Oy. And the other urologist who was having an affair with his nurse and she would sit on his lap while he dictated. He let her say things sometimes (he would tell her what to say...), and then she would giggle. Double oy. He left town shortly after that...

Then there are the orthopedists who think it is okay to dictate outside of the cast room. "The patient comes in with a BBZZZZZZZAAARRRRRRWWWWWEEEEEERRRR (sawing off casts...)"

Good times!