Well, It’s Back

CheeseQueen57 said:

3 month update

So I went for my CT scan this week. After being on the tamoxifen/Megace regime for 3 months and the CT scan was a little worse. Not what I wanted to hear. But my doctor is convinced that it doesn't really indicate a change and wants me to continue for a couple more months. The radiologists report definitely indicates advancement so I don't know why she is interpreting it that way. I had obtained the report from medical records so by the time I saw her via video conference (she was sick) I had worked myself up so that my blood pressure was over 70. 

What bothers me is she keeps suggesting my next option is chemo, even though I've told her multiple times I'm not interested in chemo and from what I've been reading, there are more effective options, especially for reoccurrence, than chemo. I told her I talked tonDr Weston at MD Anderson and what she suggested. What rings in my ears is although Dr Weston endorsed the tamoxifen/Megace  as first treatment she said, "But don't wait too long". Unfortunately I didn't ask her what "too long" was. I have that question in to her now. 

I guess I'm losing a little confidence in my current oncologist because of the chemo issue. It makes me think she's not totally up to date. I could go over to Penn where my original oncologist went and although I didn't think she was the most progressive, I did see that she is publishing articles regularly unlike my current oncologist. Which tells me she is invoked in research. But I hate to transfer all my care to Penn but I will do it if necessary. Although I can get opinions from MD Anderson, it's really not feasible for me to travel to Houston (I live in Philly area) for regular care. 

So, I've also come to the mind seat mentally that this most likely will not go away and that I can only hope to control growth. Staggering, as I know some of you know. My darling son and his fiancé are being so supportive and they want to know everything. But I'm a little sad to reach this milestone and looking once again over the edge and anticipating having to balance side effects with quality of life. 

Thanks for listening, my dear sisters. I know you understand. 

It is discouraging to go through treeatment and not only have no improvement, but disease progression instead.  What does Dr. Weston suggest you do next?

Your last paragraph really resonated with me because that's where I am as well.  Some days I think I've accepted that it's a matter of trying to control it until they can't, and other days I'm just fighting that thought.  My best wishes to you as you decide what to do next.

I wish I was gifted with the ability to come up with the "right" words. I wasn't. And, I am at a loss at the moment. Please do what gives you the best peace of mind. Don't stay with your doctor if you aren't getting a good feeling. You have to be confident in what you are being told to do. Perhaps it is time to get the latest opinion available from MD Anderson?

Thinking of you today Cheese.

Love and Hugs,

Cindi

Cheese, so sorry to hear this. As you know, am doing the same M/T as you, just into my 8th week switching every 21 days. I have a scan scheduled for early June as that has always been how we knew what was going on. So many of us have to decide what to do for the best outcome and it does make one so weary. I also understand you not wanting anymore chemo. Yet, I know how you want to be in Italy for that wedding. I am sending you all my good karma that things will get better.

CheeseQueen57 said:

3 month update

So I went for my CT scan this week. After being on the tamoxifen/Megace regime for 3 months and the CT scan was a little worse. Not what I wanted to hear. But my doctor is convinced that it doesn't really indicate a change and wants me to continue for a couple more months. The radiologists report definitely indicates advancement so I don't know why she is interpreting it that way. I had obtained the report from medical records so by the time I saw her via video conference (she was sick) I had worked myself up so that my blood pressure was over 70. 

What bothers me is she keeps suggesting my next option is chemo, even though I've told her multiple times I'm not interested in chemo and from what I've been reading, there are more effective options, especially for reoccurrence, than chemo. I told her I talked tonDr Weston at MD Anderson and what she suggested. What rings in my ears is although Dr Weston endorsed the tamoxifen/Megace  as first treatment she said, "But don't wait too long". Unfortunately I didn't ask her what "too long" was. I have that question in to her now. 

I guess I'm losing a little confidence in my current oncologist because of the chemo issue. It makes me think she's not totally up to date. I could go over to Penn where my original oncologist went and although I didn't think she was the most progressive, I did see that she is publishing articles regularly unlike my current oncologist. Which tells me she is invoked in research. But I hate to transfer all my care to Penn but I will do it if necessary. Although I can get opinions from MD Anderson, it's really not feasible for me to travel to Houston (I live in Philly area) for regular care. 

So, I've also come to the mind seat mentally that this most likely will not go away and that I can only hope to control growth. Staggering, as I know some of you know. My darling son and his fiancé are being so supportive and they want to know everything. But I'm a little sad to reach this milestone and looking once again over the edge and anticipating having to balance side effects with quality of life. 

Thanks for listening, my dear sisters. I know you understand. 

Hi,

I'm just joining back in since , I too, have had a recurrence of my uterine cancer. It has metastasized to my lungs. My reason for posting is to share that I moved from Moffitt Cancer Center to MD Anderson. I know that none of us takes a change like this lightly. I made the decision for the 2nd opinion at MD Anderson after Moffitt wanted to give me radiation again. I went the Magace and Tamoxifen route instead. I have a follow up in July.

I thought you might want to know about the NJ location for MD Anderson. I have found through this experience that I had to follow my gut. i wish you all of the best. 

Dang it CQ.  What could it hurt to call Penn?  You are right about the marketing agreement with MD Anderson.  We have one of those here, but if you want MD Anderson, you go to Houston.  Dang it. Prayers my friend that you can get some answers.

I'm sorry both that you're going through this and feeling less than fully listened to, understood, and supported by your current onc. If it's possible, as other ladies have said, it might give you some relief to find a different onc -- or at least explore what others might recommend.

I don't check in very often but please know you're in my thoughts.

Tamlen

Cheese, it is so good to hear from you. It sounds like you are on the right path for YOU! Your doctor sounds amazing and the fact that she remembered your preferences for details speaks volumes. I hope this new round of medicine is kind to your body and that you don't experience all of the side effects that could happen. 

Love and Hugs,

Cindi

I do think feeling at home with your doctor is vital. And, I applaud you for finding what seems best for you.

You seem to have a good handle on all this and know I/WE are all in your corner. Best of everything to you in the coming weeks. xoxo df

I'm glad that you're heading back to your former doctor who sounds like she's on the same wavelength as you, and that she's come up with a treatment plan that looks quite promising.  I hope you have spectactular results with minimal or no side effects.  Also, fingers crossed that the Letrozole and Afinitor approval sails through your insurance company!!