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So many questions

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Boy, my thoughts are all over the place at this point! As many of you know I've recently been diagnosed with a recurrence. Trying to sort things through in my mind. Wondering about my initial diagnosis and treatment. Based on findings from surgery I was diagnosed with Stage 1A carcinosarcoma and papillary serous (5.5 cm mass consisting of both types) with serous carcinoma invading through 40% of myometrium. I was told several days ago by the gyn onc who's been supervising my treatment that the malignant lymph nodes recently removed had serous cells and no carcinosarcoma (a CT scan showed additional lymph node involvement and a suspicious area further up in abdomen). My initial treatment after radical hysterectomy was 6 rounds of chemo with taxol and carboplatin followed by 3 brachytherapy treatments.

I was somehow under the illusion that Stage 1A made recurrence less likely (although still possible). I had confidence that the odds would be in my favor and the fact that my overall health was good would help.

In the hysterectomy only 9 lymph nodes were removed and examined. None of these had cancer cells. Why only 9? The peritoneal washings were positive for malignant cells so maybe that was a clue?

Should I have opted for pelvic radiation? The treating gyn onc indicated that the most likely site for recurrence is vaginal so I decided to go for just the 3 brachytherapy (internal) radiation treatments. I do have an irritable bowel and chronic constipation so was concerned about further gastro-intestinal problems from the pelvic radiation. Now in hindsight I guess I should have gone for the full monte.

Wondering about the significance of CA 125? Mine was checked at Dana Farber where I was initially treated and it was low (12) before hysterectomy when the cancer was active. It was never checked again because the gyn onc closer to home who I saw during treatment said it wasn't a good indicator. Wondering if there still could have been a rise (even in someone with an initially low CA 125) that would have been suspicious earlier on?

And of course I just want to make good decisions about where to go from here. But from what I read here and elsewhere there is no one direction to go with a recurrence. Just hoping I can get the best information possible, sort through it all, and make a decision I feel good about.

I know, we can't go back we just have to keep going forward. It's just hard sometimes not to wonder....

Like I said, just trying to sort through it all. Next week I'll be going back to Dana Farber for a consultation with the gyn onc who I saw initially and did my surgery to see what their thinking is about where to go from here. Wondering what questions you all think would be most important to ask?

Sandy

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

Sandy, my heart goes out to you.  I think we all can 'what if' everything to the tenth degree and I am not sure we would ever get answers.  I do think you should write down ALL your questions and ask at Dana Faber.  You should get to ask AS MANY QUESTIONS AS YOU WANT.  I remember thinking, "this is going to sound silly" but I still asked it.  I was left to feel like they would have taken as much time as I needed - and you should too.

Start your list - nothing is off the table.  Hugs

 

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

I think this all has, if nothing else, made me braver and more assertive. Also the women on this discussion board have greatly contributed to my knowledge and awareness. Thinking that when everything else feels so out of my control, if nothing else, feeling like I'm covering all the bases and having my questions fully answered is a way I can feel a little better.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

i can tell you that it is not uncommon for lymph node metastasis from carcinosarcoma to have serous only components. I know of several women, myself included, who have that situation.

 My CA 125 was before surgery bottomed out at siix  settled at seven after treatment. It has never been higher than 14. None of the doctors say it is a good indicator for me. Even if yours had been checked, it may not have shown anything.

As far as pelvic radiation, there are no guarantees. As you have seen on this board, there are some who have "done it all" and still recurred. 

You made the best decision you could based on the information you had at the time. That is all any of us can do.

 Moving forward I would ask the doctor why they're recommending the treatment they recommend and what their ultimate goal is for the treatment. You are right. After frontline, the waters get even murkier as to the right direction to go, but there are options, more all the time.

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

None of us operate in a perfect universe especially in this situation do we? I'm going to focus my questions on treatment options and not try to second guess the shouldas or wouldas at this point. Will definitely ask what they see as the goal. Good question! 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I completely agree with you all. Life is like driving a car. If you want to move forward you need to look out the windshield, not in the rearview mirror.

My question to the doctors would be what tests will they be running on the resected lymph nodes in order to help them determine which treatment(s) will offer the best chance of success? 

There are so many targeted treatments available but they only work when certain markers or mutations are present so it's important that they get a full panel on the tissue in order to give you the most options. 

Even if you don't understand their answer, it's important to get them thinking about all the tests that need to be run ahead of time. This will "plant that seed" that will (hopefully) bloom into a myriad of successful treatment options for you.

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

cindy0519
Posts: 173
Joined: Nov 2015

Sandy - I too have a lymph node recurrence (retroperitoneal para aortic node). I was originally diagnosed with Stage IIIC1 USPC (1 pelvic node was positive). I did the 6 cycles of Carbo and Taxol followed by 28 external radiation treatments as frontline and still had a recurrence almost a year to the day from my last chemo. 

Is your Onco talking at all about genomic testing?  I have surgery to remove hen node (praying it is possible and the node is not around the aortic artery) in the morning.  The node will have pathology done on it here and then be sent to Foundation One for genomic testing. This looks at over 300 gene mutations and tells the Onco what mutations your cancer has and what FDA or trial drugs the mutations respond to. I am really excited about having this done as I do not qualify for any trials as I was diagnosed with two (breast and USPC) cancers within four months. The test is expensive ($5,800) and insurance may push back on it but Foundation One helps you with fighting for coverage.  This might be worth looking into if you have biopsies or surgery remove a node. 

Your spot on though...the questions are endless and the answers hard to come by.  I will be thinking of you!

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Cindy, genomic testing is definitely one of the questions I'm going to bring up at my appointment at Dana Farber. My understanding is that it's necessary to access the trials and new drugs. So sorry to hear that you won't qualify because of previous cancer. I saw in another post that you've started treatment for the lymph node recurrence. Hope things are going well and you're feeling upbeat.

I had heard about Foundation One but didn't know they'll go to bat for you with the insurance. That's wonderful because judging from my experience just this past week where the insurance was questioning my needing a PET scan I'm pretty sure I'll need their help. Thank you so much for the information!

I'm thinking about you too! Be good to yourself! We're both going to get through this!

 

cindy0519
Posts: 173
Joined: Nov 2015

Here is a link to a sample report that is produced from genomic testing Foundation One does:  http://foundationone.com/docs/FoundationACT/FACT%20CUP%20EGFR%20Sample%20Report%2020160728.pdf?__hstc=197910000.7e60b86e037292aa06aca25d0c93dfbb.1489670793555.1489670793555.1489670793555.1&__hssc=197910000.1.1489670793555&__hsfp=2254642082

ConnieSW
Posts: 1575
Joined: Jun 2012

Good luck tomorrow. 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Stay strong and ask questions! Let them know where you want to go with treatment and the outcome you want. I have always believed that we have the right to know all we can and then choose.  This board helps us stay strong. Hugs!

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

My appointment for this week got cancelled because insurance had not approved a PET scan. Got on the phone with the insurance company and apparently that worked to get the scan approved however appointment has now been moved up to this Thursday (4/13). I'll update after the appointment.

Ljwatten
Posts: 1
Joined: Dec 2017

While treatment here is not glamorous one never has to think about money or if the insurance co will approve, unless the treatment is untested. I had stage 3C ovarian, radical hysterectomy, 9 chemos, taxol and carboplatin, 17 avastins. so far in remission but am watched every 4 months now, blood test plus ultra sound plus extended appt with the oncologist. Still recovering from the side effects, although they are diminishing every day. Not crazy about the damocletian sword over my head, finding it difficult to exit cancer mode to cancer survivor mode. Sometimes I think less research would have been better than the wholesale absorption of information, statistics etc. 

evolo58
Posts: 293
Joined: Dec 2017

Sometimes, I think you're right. Statistics can be extremely misleading, since many go back five, ten or more years, and treatments have changed that doctors later found out often extend disease-free remittance (DFR) and overall survival (OS). Studies are often done using cases from the 90s, early 2000s, etc. Many don't have enough cases, so the pool of test subjects is small. Ten or fifteen test subjects in a group ... or even fifty ... really aren't enough to reach a valid conclusion.

Oh ... and let's not forget the studies that contradict each other! I'm seeing that right now with a particular subject of extreme importance to me right now ... and the outcomes are very, very different. Sometimes, I need to take a break from all this info because it can mess up my mind. There is a reason why one should use Dr. Google with care. :) And sometimes, even doctors' and nurses' info can contradict each other!

I wish we had some form of socialized medicine here. For many, our current system is a mess. Many do fine on it, though.

ConnieSW
Posts: 1575
Joined: Jun 2012

to live in a country where all citizens can count on medical care. 

It is hard to graduate from treatment to post treatment mode but you will get there. It helps to know we all go through pretty much the same phases. It's comforting not to be alone.  Go luck to you. 

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