Change in treatment plan carcinosarcoma MMMT

Editgrl said:

Debra

When we were discussing the difference in opinions between my GYN/ONC and radiologist #1, my GYN/ONC did tell me "If it was my wife, my sister, or my daughter, I would encourage them to have the radiation, but no matter what they decided, I would support them in their choice."  I don't think it was just a line.

decisions are so hard sometimes.  My prayers are with you.  Lou Ann

TeddyandBears_Mom said:

I so relate

And I AM an earlier stage! Still very confusing. Yesterday I had decided to go with the Brachy. And today I'm waffling again! I found this on one of my research days... You may have already seen it....

• Mayo; 2007 (1982-2005) PMID 17688926 -- "Role of systematic lymphadenectomy and adjuvant therapy in stage I uterine papillary serous carcinoma." (Thomas MB, Gynecol Oncol. 2007 Aug 2; [Epub ahead of print])

• Retrospective. 42 patients (IA 15, IB 21, IC 6). 81% LND, 69% omentectomy, 45% peritoneal biopsies. Median F/U 3.2 years

• Outcome: 5-year OS 85%, PFS 78%. By stage OS IA 100%, IB 89%, IC 60%.

• Recurences: LN recurrence in LND 0/34 vs. no LND 1/8 (NS); none in IA regardless of post-op therapy; 0/20 IB and IC who had vaginal BT vs. 2/7 with no vaginal BT (SS). Hematogenous/peritoneal recurrence in 0/6 patients with chemo vs. 3/13 patients with no chemo.

• Conclusion: Observation reasonable for IA if LND done; for IB and IC consider chemotherapy and vaginal brachytherapy

Thank you 

Editgrl said:

Getting ready for yet another opinion

Tomorrow I will have my consultation with a panel of oncologists regarding radiation therapy.  If the majority feel there is a benefit, I am already scheduled to begin external on February 1.  It will be interesting to hear what their opinions are and how they arrived at them.  Luckily, I am able to combine a little fun with the trip to San Francisco. Going down there today to stay with one of my best friends who lives close to where my panel will be.  She'll be going with me as another set of ears, though they will record the session and provide me with either a CD or mp3 file.  I hope to find some clarity, but I am realistic in that this may end up being another split decision.

Chris

Hi Chris, 

Thank you for your last note. I am so glad for you are doing so well. You are an inspiration. 

Good luck tomorrow. I will be sending positive energy and trusting you will get your clarity. You are headEd to my home town. You will be in great hands!   

I met my shamantic healer today. Lining up my 'team'. Thank you for that insightful suggestion. 

All the best tomorrow. I am only logging on once a week;  may be a delay in my response. I'm busy getting my run/walking mileage back up. 3 Wks post op-2.5 miles (only walked) it felt so good and normal! 

Would you be willing to shard the contact info of your panel.  Not getting rapid responses for my 2nd opinion request  

Cindy

unknown said:

Yes, chemo #3 is in the books!

They didn't seem concerned about it, so chemo went as planned.  I met a different chemo nurse, I really like her better.  She explained that they have already discussed lowering my dose, I'm resistant to that, but she said my cancer will still get the maximum dose (how I don't know?), and that right now the excess was causing the increased side effects?  I didn't quite follow her, but she sounded convinced that my progress (& prognosis) wouldn't be effected with a lower dose.  I'll see how I do on this chemo, and if my blood holds, I think it's still go for agressive chemo.  I also had a new & great infusion nurse, she got the port accessed with one stick, and when she pulled it out, it didn't feel like she was pulling the port up too much.  I had a really great day.  Hugs

I had to have my dosages lowered several times and put off for a week a couple of times because of low platelet counts.  My doctors also worried about the nerve damage that caused Nueropathy.  I don't think the lower dose hurt the overall effectiveness of my treatments.  Hugs and prayers, Lou Ann

Editgrl said:

thesecondopinion

thesecondopinion (yes, all one word!) is a non-profit organization in San Francisco that provides second opinions for cancer patients residing in California, so unfortunately, Cindy, you would not qualify.  It is a panel review, no charge to the patients.  Five doctors were on my panel, 2 medical oncologists, an oncology radiologist, a "regular" radiologist, and a gynecological oncologist. And then a pathologist separately reviewed the case. They received all of my labs, charts, scans, etc. about a week before the panel so they could be reviewed.  They then met before my scheduled appointment to discuss my case with one another and hopefully come to a consensus.  Then I met with all of them.

What a surprise here, there was no consensus!  They actually spent a lot more time than usual prior to my appointment discussing the case because there were wide-ranging opinions on what was the best way to proceed regarding radiation.  I would say that by the time I was ushered into the room, the group was pretty lively.  The medical director joked about two of the doctors almost coming to blows, lol.  Right now, I am still assimilating information from them, but a few things I will post now, with more information after I get the written summary of the panel (and I'm thinking THAT should be really interesting.)

First, pathologist felt that my carcinosarcoma diagnosis should have been serous carcinoma.  Surprise!  Not that that makes a huge difference in treatment, but still... really?

Second, there was major disagreement on the benefit/risk of external/internal radiation for me.  Oncologic radiologist played down the risks, but one of the medical oncologists was concerned about external radiation compromising my body's ability to fight should there be a recurrence.  The GYN/ONC was pretty strongly against the extended field external as well.  ONC/RAD countered by saying radiation could be targeted to avoid smalll bowels, organs, as much as possible.  She also said that my smaller size would actually work in my favor as I would require a smaller "dosage" for the radiation to get to where it needs to go.

Third, I thought it was interesting that as far as follow up, they really emphasized the internal physical exams every 3 months and not necessarily the scans as often.  I know there are several women on this site who have opted for no scans unless they feel something isn't right.

There was a lot more, but I am going to wait until I get the summary before I continue.  I am getting a recording of the session as well.  Suffice it to say that I did not get the clarity I was looking for;  what I got was a prime example of what we know is true:  it's a crap shoot!!!!  No one could say that radiation would give me a better chance of beating the beast. It might, it might not.  The only thing they could say was that pelvic radiation would pretty much eliminate pelvic recurrence, but not distant recurrence.  Nor have studies demonstrated an improvement in overall survival for my stage with radiation.  There are some studies that have concluded comparing just chemo with chemo and radiation but results have not been released yet.  As we know from the women on this site, some have gone full bore with surgery-chemo-radiation and recurred  and others have done just chemo or radiation and been fine and vice-versa.  I feel like I'm facing Clint Eastwood and he's growling "You've got to ask yourself one question:  do you feel lucky?"

While I have gone through my CT simulation for external, and in fact, my radiation center has me scheduled to begin on February 1, I think that I will call my doctor(s) to at least postpone that date a week.  They will all received the summary of the panel as well and I want to have one more discussion with them, and to go over some of the research that the GYN/ONC provided me with before I make my final decision.  

I have to admit that there is a part of me that wants to just say, to heck with the radiation.  It's gone for now, and I will keep it from coming back my own dang self!

Hugs, ladies.  Keep fighting the good fight!

Chris

As far as I know, we have nothing like that panel here in Wisconsin.  I have read everything I can about serous (UPSC) cancer and you're right, it's a crap shoot on the treatment.  The latest thing I read today was about genetic markers which explained why does Stage I mestastasize even after chemo and radiation for some and not others?  There is very little Stage II UPSC - why is that?  So many questions, but very few answers.

I'm very interested to hear the rest of your story and what you decide to do.  With my Stage II my gyno/oncologist said that radiation wasn't necessary yet, I've also read the best treatment are three chemos, radiation and then three more chemos.  He also never offered to reduce the chemo dosage so I could possibly continue chemo or to do it every week but at a much lower dosage.  

Good luck to you!!

Love, 

Eldri