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Decision

SandyD
SandyD Member Posts: 130

As you know I recently found out I have a recurrence (I was originally diagnosed with carcinosarcoma and serous cancer in Nov. 2015). 

I had my appointment with a gyn onc at Dana Farber (the same one who did my hysterectomy). I brought with me the results of the PET scan I had. The PET scan bore out what the previous CT scan showed as far as spread to two lymph nodes (right external iliac chain and right inguinal nodes). I had recently had another lymph node removed for biopsy in which serous cells were found. However the PET scan did not confirm a finding of something described as "very subtle nodularity within the region of the omentum" seen on the CT scan. The CT also said "small peritoneal implants cannot be excluded". However the report also said this could reflect "mildly prominent vascular structures associated with hiatal hernia" (I do have a large hiatal hernia).

With these findings in mind and the inconsistency between the CT and PET scans as far as the possible nodule on the omentum, the Dr. recommended one of two options to me. The first option is to go ahead with pelvic radiation (for initial treatment besides the hysterectomy I had 6 rounds of chemo and 3 brachytherapy treatments but not pelvic radiation). This option focuses on the spread to the pelvic lymph nodes but would not be helpful if there's more distant spread which would have to be treated systemically (i.e., chemo and/or maybe immunotherapy).

The second option he proposed is surgery which would do two things: (1) remove the two lymph nodes and (2) explore for more distant spread such as to the omentum/peritoneum. The advantage of this is that it may make it possible to determine if I need a systemic treatment. I'm not totally clear on how extensive the surgery would be and how long recovery will take. He did say that he thinks he may be able to do it laproscopically. I need to ask some more questions about this. I am planning to make an appointment with my local treating gyn onc and talk to him some more as well. The Dr. at Dana Farber also said that I could have it done there or by the local gyn onc.

Any thoughts or ideas about this or additional questions you think I should ask? I need to make a decision very soon about how to proceed.

Comments

  • Kvdyson
    Kvdyson Member Posts: 789
    edited April 2017 #2
    That is a tough decision,

    That is a tough decision, Sandy. I'm glad to hear that you're getting more information and that you have a local gyn-onc to give you a second opinion. Once you have all of that, the decision may be more clear to you.

    Good luck on whatever you decide and keep us posted on how you are doing. Kim

     

  • derMaus
    derMaus Member Posts: 558
    Based on what you wrote, if

    Based on what you wrote, if it were me I'd go for the surgery. It seems they're saying it could be done on a minimally invasive basis and IMO you'd get a better sense of what you're dealing with. Plus you could get some live tumor cells to have an assay done, should you so choose. That's an option I wish I'd been given when I had my original surgery.  My thoughts and prayers to you as you work through all these details. B

  • SandyD
    SandyD Member Posts: 130
    derMaus said:

    Based on what you wrote, if

    Based on what you wrote, if it were me I'd go for the surgery. It seems they're saying it could be done on a minimally invasive basis and IMO you'd get a better sense of what you're dealing with. Plus you could get some live tumor cells to have an assay done, should you so choose. That's an option I wish I'd been given when I had my original surgery.  My thoughts and prayers to you as you work through all these details. B

    Yes, going for the surgery

    I've decided to have the surgery and to have it at Dana Farber. Gaining more of a sense of certainty about what I'm dealing with is definitely an advantage. I mentioned wanting to have genetic profiling of the cells to the Dr. who's doing the surgery (and also did my original hysterectomy). They do have my original tumor material there. Now realizing the probability that even if removing the lymph nodes results in another remission, I'll likely face a future recurrence, I want to be proactive about potential targeted treatments. Now I just have to work out all the logistics of getting there, etc. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,927 **
    SandyD said:

    Yes, going for the surgery

    I've decided to have the surgery and to have it at Dana Farber. Gaining more of a sense of certainty about what I'm dealing with is definitely an advantage. I mentioned wanting to have genetic profiling of the cells to the Dr. who's doing the surgery (and also did my original hysterectomy). They do have my original tumor material there. Now realizing the probability that even if removing the lymph nodes results in another remission, I'll likely face a future recurrence, I want to be proactive about potential targeted treatments. Now I just have to work out all the logistics of getting there, etc. 

    Sandy, you had a LOT to think

    Sandy, you had a LOT to think about in a little period of time!!!  I think you made the right decision - your reasoning on finding out EXACTLY what you are dealing with and what can best help you in future decisions is important as well.

    Please keep us posted

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Sandy, I agree with NoTime!

    Sandy, I agree with NoTime! Looking forward to hearing about your great results as you move along. Please keep in touch with us.

    Love and Hugs,

    Cindi