Change in treatment plan carcinosarcoma MMMT

Interesting!  Please keep us posted on news and your decision, Chris. 

Editgrl said:

The plot thickens

Just got a call from my gynecologic oncologist.  While the radiation oncologist is saying no external radiation, the gyn/onc is strongly in favor of it. He is recommending a second opinion from another radiation oncologist which I already have scheduled, and was very much in favor of me getting an outside second opinion as well.  He is also going to present my case at the next sarcoma cancer tumor board.  Nothing is ever cut and dried with cancer, is it?

I agree! Nothing is cut and dry. I sure hope they come back with solid information for you to use. It is so difficult when even the doctors don't agree on the correct direction.

Good to hear from you Chris. I know you will assess everything and make the best decision for your best health!

Love and Hugs,

Cindi

DrienneB said:

Thickening Plot

Hi Chris,

I have uterine MMMT, stage IIIB, grade 3 (of course). My tumor was considered perhaps more than 90% of the way through my myometrium (hard to tell when everything is morcellated), and also I had a positive pelvic washing. My gync/onc did not want me to do radiation, shouting 3 times on the phone to me "It's NOT going to increase your chance of survival!!" but a radition therapist was in favor and a tumor board at UC San Francisco was also in favor of pelvic radiation and possibly brachyterapy. I consulted another gyn/onc from USC in Los Angeles. He said it would be different if they could direct the pelvic radiation to the one side--the same side where the tumor developed...I also had some invasion of my cervix.

They say I have  40% risk of getting a pelvic recurrance. But so much time had passed while I was trying to get input,  and I was struggling with lymphedema which developed while I was still doing chemo. So, I just decided against it. I am 2 years and 7 months out from diagnosis. Not so many years yet, but we'll see. I don't even want to have CT scans any more, but will when and if I get new pain.

-j

It's tough enough coping with a cancer diagnosis without the additional stress of not knowing the best treatment course of action. Fortunately, Chris, you are savvy and intelligent and will make your decision based on all the information gathered. I have no idea what I would do. Radiation is a scary proposition with - in some respects- worse and lasting side effects than chemo. I have wondered if dear Ro would still be with us if she had opted for surgery to remove the lymph node by her neck rather then radiation treatment.

Warm Wishes,

Cathy

Kvdyson said:

Uterine MMMT - What My Gyn-Onc Recommended

Hi, I'm brand new to this board. I have uterine MMMT, stage 1b, grade 3. My gyn-onc has recommended 25 treatments of external pelvic radiation sandwiched between my 3rd and 4th rounds of chemo. He says that because of my age (47), he wants to treat this beast as agressively as possible. He told me the chance of recurrence was 30% and that this mix of chemo and radiation would knock that down by half. Others have said that his numbers are pretty optimistic but I'm willing to trust him. Maybe I'm just being delusional but that's okay by me for now.

Wishing you strength and good health,
Kim
Debulking Surgery 10.5 cm (TAH & BSO, 14 lymph nodes excised) - Sept 2015; 47 years old
Dx: Uterine MMMT Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - Apr 2016
Radiation - external, 25 treatments over 5 weeks - Feb - Mar 2016

Glad you found us! Sorry for the circumstances though.

I hope you have an "easy" time with your treatments.  There is nothing easy about it! But, there are different degrees of our bodies toleration of the treatments.

Your attitude will help you tremendously with your journey.

Please reach out with any questions. Someone here will have input for you.

Love and Hugs,

Cindi

Kvdyson said:

Uterine MMMT - What My Gyn-Onc Recommended

Hi, I'm brand new to this board. I have uterine MMMT, stage 1b, grade 3. My gyn-onc has recommended 25 treatments of external pelvic radiation sandwiched between my 3rd and 4th rounds of chemo. He says that because of my age (47), he wants to treat this beast as agressively as possible. He told me the chance of recurrence was 30% and that this mix of chemo and radiation would knock that down by half. Others have said that his numbers are pretty optimistic but I'm willing to trust him. Maybe I'm just being delusional but that's okay by me for now.

Wishing you strength and good health,
Kim
Debulking Surgery 10.5 cm (TAH & BSO, 14 lymph nodes excised) - Sept 2015; 47 years old
Dx: Uterine MMMT Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - Apr 2016
Radiation - external, 25 treatments over 5 weeks - Feb - Mar 2016

Welcome Kim!  As the others have said, this is a group nobody wants to join but if you're looking for help and encouragement, this is the place to be.  I only made three chemos and I was done.  The chemo caused some major problems - mentally and physically and, four weeks after the last chemo I'm still dealing with them.  However, a lot of the ladies here have been able to tolerate chemo and radiation with no major problems.

Best of luck and let us know how things are going!

Love,

Eldri

Kvdyson said:

Uterine MMMT - What My Gyn-Onc Recommended

Hi, I'm brand new to this board. I have uterine MMMT, stage 1b, grade 3. My gyn-onc has recommended 25 treatments of external pelvic radiation sandwiched between my 3rd and 4th rounds of chemo. He says that because of my age (47), he wants to treat this beast as agressively as possible. He told me the chance of recurrence was 30% and that this mix of chemo and radiation would knock that down by half. Others have said that his numbers are pretty optimistic but I'm willing to trust him. Maybe I'm just being delusional but that's okay by me for now.

Wishing you strength and good health,
Kim
Debulking Surgery 10.5 cm (TAH & BSO, 14 lymph nodes excised) - Sept 2015; 47 years old
Dx: Uterine MMMT Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - Apr 2016
Radiation - external, 25 treatments over 5 weeks - Feb - Mar 2016

i just joined. I flagged your note because it was so concise and succinct and I want to follow your journey. Hope 'flagging' wasnt the wrong thing to do. Anyway, thanks for sharing your details and as soon as I have my pathology from my TAH & BSO, I'll post. 

Thanks - Cindy 

Cosaltlife said:

His

i just joined. I flagged your note because it was so concise and succinct and I want to follow your journey. Hope 'flagging' wasnt the wrong thing to do. Anyway, thanks for sharing your details and as soon as I have my pathology from my TAH & BSO, I'll post. 

Thanks - Cindy 

Hello, Cindy.

Welcome, I am sorry we are meeting under these circumstances.  Just an FYI, if you clicked on the "flag this" in the lower right hand corner, it is to notify the moderators of posts that need to be reviewed or removed.  There have been ridiculously crazy posts sometimes, and they will look at the message.

Fortunately, the CSN staff is super and realize that if that is the button you hit it was just a mistake.

So, I thought I was 100% committed to doing the brachy. And the last few days, I find myself questioning the decision.

I'm not worried about the actual procdedure. It is the after effects that I'm not sold on living with.  On the other hand, the thought of recurrence that creates the need for chemo again is daunting.

No guarantees either way. But there are several women on our board that did not do radiation and are still in good shape. I am a phase 1A. Very early stage with hardly any penetration into the uterine wall.  Such a hard decision.

I plan to do some more reading and then determine again which way I will go. Hate being so wishy washy!

Love and Hugs,

Cindi

Editgrl said:

Radiologist #2 weighs in

Well, I will say this...  if I do have radiation, I'm going to have this guy do it.  The difference between radiologist #1 and #2 was stunning.  He copied information for me, explained why I might or might not want to do various types of radiation, told me specifically which sources he was using to make his recommendations, took the time to educate me a bit on how to read results of various studies and had an air of cooperation and confidence about him.  Radiologist #1's recommendation was pulled from one source; radiologist #2 was speaking from his experience and multiple resources.  And, of course, the problem is, the cancer is rare, and there is, as yet, no consensus of opinion on the best treatment.

Dr. Schmidt (Radiologist #2) does not think I need to have both external and brachytherapy.  I had no cervical involvement, my tumor was high in the uterus and my margins were clear.  My cancer also tends to recur distantly.  Radiation would be to take care of clumps of cancer cells in the lymph nodes that were not decimated by chemo. He also said that he can design the external treatment to cover the vaginal cuff, just to cover the bases.  I think StrongerthanIthought had the same protocol for her radiation treatments.  BTW, he did show me the "unit" that is used for brachytherapy...  frankly, I've seen scarier looking vibrators.  

So the decision making continues.  I have yet another multidisciplinary opinion scheduled, and then I will make up my mind and never look back!

 

I did have the same radiation protocol.  At the end of what was planned to be the external treatments followed by brachytherapy - the external radiologist, brachy radiologist and my gyn onc met. It was decided that 3 more external treatments (targeted differently than the rest) would have the same results.  So no internal for me  So far - NED for 16 months! Best wishes for you in whatever decision you make.  Barb

2007.  At age 67.   Grade 3/4. Uterine Carcinosarcoma.    Through wall in to bladder and concern re left kidney.  I had radiotherapy only.   Two appointments beforehand to ensure the target area.

I was given full instruction how to care for myself and had immediate access to a doctor at all times if required.   Other than initial slight nausea, easily treated,  and the need for an afternoon rest in the later stages I had no problems.    I was told that chemotherapy would be necessary if there should be a recurrance.

I have slight L leg Lymphedema as a result of the lymph gland removal but 8 years on no detrimental effects from radiotherapy.       I appreciate every day.