Thursday, March 10, 2011

I'm on a role


Well I have the best luck in the world, or maybe not! I just wish I could win the lottery as easily as I seem to be getting perfect scores for breast cancer.  As you all can tell, I’m not in the best of moods tonight.  We went to the surgeon in Wichita today and it was a long, long visit.  Overall it looks like the tumor hasn’t grown and my lymph nodes looked OK on the ultrasound so that is the Positive.  Of course we won’t know about the lymph nodes until they do and MRI and not fully until surgery. 

However I’m also triple negative.  Evidently this isn’t so good and I’ve been told not to google it or I’d be scared to death.  Well, of course I looked at a few things and that stats say: http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior.jsp  
Tends to be more aggressive than other types of breast cancer. Studies have shown that triple-negative breast cancer is more likely to spread beyond the breast and more likely to recur (come back) after treatment. Five-year survival rates also tend to be lower for triple-negative breast cancer.
Tends to be higher grade than other types of breast cancer.

However on the positive side: Researchers also are paying a great deal of attention to triple-negative breast cancer and working to find new and better ways to treat it.

So I’m a little bummed but am trying to keep my head up.  The clinical staging said I was probably a stage 2 which is good.  My grade is 3, which isn’t so good but I guess I have to take the good with the bad.  I also tried to get my BRCA testing today however after being stuck several times my blood just would not flow.  Which is very unusual for me.  Maybe I need to have the Kiowa lab girls help me out here, as they are expert phlebotomists and have never had an issue drawing my blood.  SO I have to go back tomorrow to try again (ugh). Apparently if I test positive, which is possible, as I’m told that many young women with grade 3 are BRCA positive, then I will also need a hysterectomy.  Oh the fun I’m having.  This of course would have to be done after the breast cancer treatments and recovery so we’ll call that phase 2 and be hoping it’s negative.  

We talked about treatments options and I’m pretty set on a double mastectomy.  I don’t think I can bear having another diagnosis of breast cancer and since I’m triple negative it’s a lot more likely to occur.  I say take them as I want to do all I can to stop this cancer from spreading.  I do plan to have reconstruction and I’m told this process starts in the operation room when they remove the breast. 

I meet with my Wichita oncologist tomorrow and am looking forward to this as he’s been my doc for 4 years now and I have trust in him.  The surgeon told me that the oncologist might want to do chemo before surgery and I found out it can last 5-6 months? I was thinking more like 6 weeks but I guess I was completely off regarding how long this process takes.  This upsets me and I just hope MD Anderson can set my protocol and doctor Troung can administer the bulk of treatments as I don’t want to stay in Houston for months on end.  I have three kids that need me and really would prefer to do this at home as opposed to having to go to Houston every few weeks.  So keep your fingers crossed that my docs will be able to work together to coordinate my care in a way that is manageable for me and will also provide me with the best possible success.

I told my surgeon that I was planning to get a second opinion at MD Anderson and she was supportive of that.  However I found out from MD Anderson today via my patient rep that “Your case is a little different than the usual. We have scheduled you for your  registration followed by an office visit with the medical oncologist on 03/22nd. On 03/24th you are scheduled to have a repeat mammogram, repeat ultrasound with possible biopsy, and on 03/25th you have a consultation with a surgical oncologist. The medical oncologist will determine whether you are ready for chemotherapy or still need to visit with the surgical oncologist. I can't really tell you if you will have surgery when you are down here, this is case by case basis.

This seems to coincide with what Dr. Nicholas told me too as I was confused as to why I’d get Chemo first but I guess that’s a variation of the protocol used on some patients.  MD Anderson does have some special studies on triple negative and I hope I might be able to be in them.

I am also scheduled for an MRI tomorrow.  I really wanted to get this done to see if they can see the cancer any other parts of my body. I’m praying they don’t.  I also asked about a PET scan and evidently it’s not as good for breast cancer but Doctor Troung might want one so we’ll see about that tomorrow.  I will then bring these scans to MD Anderson too.  I am glad I went today but I’m also more down as now I know more and it’s scary. It’s going to be a long road but I know that I have so much support and love that I will get through and beat this thing.  I think I will also buy a lotto ticket tomorrow as I’m on a roll for luck so maybe I’ll get lucky and win the lotto too.  Good night everyone and sweet dreams.  Also way to Go South Barber Chieftain Boys Basketball in winning their first game at STATE.  GO all the Way and win it.  :)

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