Change in treatment plan carcinosarcoma MMMT

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Editgrl
Editgrl Member Posts: 903 Member

Interesting development here.  While external radiation to follow chemo had been discussed since my staging (3c2) after surgery, my doctors are now re-evaluating that.  This morning I talked with the radiation oncologist I had consulted with back in October.  Right now, he says that the most recent studies and research do not show a statistically significant improvement in survival rates for carcinosarcoma when pelvic radiation is used and that there is no difference in results between using pelvic or brachytherapy.  I want to emphasize, as he did, that this is only in regard to carcinosarcoma, not other uterine cancers.  

The research I had found was similar in outlook with adjuvant radiotherapy for this cancer being somewhat controversial with some conflicting information and studies.  In any case, I am now having a consultation next Monday with another radiation oncologist, this one specializing in brachytherapy where we will discuss the possibility of that methodology only with no external.

I know there are some women on here with carcinosarcoma who underwent chemo only with no radiation, txtrisha55 for one.  I'd like to hear others' experience as well.

Can't say that I'm disappointed in the possibility of not undergoing EBRT, but I do want to make sure that I am giving myself the best shot to beat this.

Chris

 

 

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  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Hi Chris
    there was some

    Hi Chris

    there was some debating between my gyne/onc and my radiation/oncologist on whether or not I should have pelvic radiation when I was done with chemo.   my gyne/onc wanted both pelvic and brachytherapy.  However in the end I only received 3 brachytherapy treatments. the radiologist indicated that for me it was more of a risk to get pelvic radiation as the long term scarring would greatly effect my intestinal health.  So I only went with the 3 brachytherapy.   Even that 7-8 years later caused a blockage in my ureter.  So I am glad I didn't have pelvic radiation.  To boot I have so much scarring as it is as everything is attached Together.   My recent surgery took at least 45 minutes trying to free my ureter so they could reimplant it.

    also they do not know what the long term effects are of radiation.  

    Kathy

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    Interesting!  Please keep us

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

     

  • Editgrl
    Editgrl Member Posts: 903 Member
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    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?

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    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?

    Hard Decision

    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
    DrienneB Member Posts: 182
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    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?

    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

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    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

    Between a rock and a hard place!

    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
    Kvdyson Member Posts: 790 Member
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    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?

    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

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    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

    Kvdyson

    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

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    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.  This isn't

    Welcome.  This isn't necessarily a club you ever wanted to join, but the members are the best folks in the world!Wink

    You are not alone.  Feel free to ask anything.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    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

    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

  • giggs100
    giggs100 Member Posts: 91 Member
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    Same chemo treatment you are having

    Hi Kim I am going through the same chemo treatments as you.  In fact this past week I just finished up my second set of treatments.  No mention as of yet on radiation treatment for me. I am Stage 3c2 and 71 years old but I am told by others that is being treated at the same cancer center that I probably will get told after my chemo is over.   So  we will see what the future will hold. I started my treatments on Dec. 8th.  Wish you good luck on your treatments and keep us posted on how you are doing as I will.  If you have any questions please feel free to ask.

    Jerri

  • Cosaltlife
    Cosaltlife Member Posts: 8
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    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

    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 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    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 

    Cosaltlife - Flagging

    Hey Cindy - Using the Flag feature will send a note to the Administrator that there is something wrong with the post. So, if you were trying to flag it to bring it back to you, that won't work.

    Hope I didn't misunderstand your intent. :-)

    Welcome. You will find a lot of great information here to help you with your journey.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,385 Member
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    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

    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.

     

  • Editgrl
    Editgrl Member Posts: 903 Member
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    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!

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Thanks for the update Chris

    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. Undecided

    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

  • Thank you for sharing your info

    That's very interesting, and I can see you having confidence in #2.  If (or when) I am faced with the same decision, I will use this info to ask questions with my doctor and see why he might want to do radiation.

  • StrongerthanIthought
    Options
    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!

     

    You are right

    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

  • ncg007
    ncg007 Member Posts: 138 Member
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    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!

     

    Radiation

    Chris,

    After 3 opinions and the final agreement of Radiologist, Gyn/Onc, and cancer review board it was decided for me to have external radiation only.  It was also decided to be aggressive with my high grade cancer type and start with Chemoradiation vs sandwiching radiation between 6 rounds of carboplatin & paclitaxel. Day 1 was chemo with Cisplatin along with radiation.  I had a total of 28 radiation treatments (5 days/wk), last 3 were in place of brachytherapy and targeted differently and a second Cisplatin 4 weeks after the first.  5 weeks after Chemoradiation completed I started on 4 rounds of carboplatin & paclitaxel every 3 weeks; I have 2 to go.

    Best of luck on your decision making, I know it's not any easy one.  You made a smart choice on getting another opinion.

    Nancy

  • cleo
    cleo Member Posts: 144
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    Radiotherapy

    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.