Change in treatment plan carcinosarcoma MMMT
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
Comments
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Hi Chris
there was someHi 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
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Interesting! Please keep us
Interesting! Please keep us posted on news and your decision, Chris.
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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?
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Hard DecisionEditgrl 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
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Thickening PlotEditgrl 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?
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
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Between a rock and a hard place!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
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Uterine MMMT - What My Gyn-Onc RecommendedEditgrl 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?
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 20160 -
KvdysonKvdyson 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 2016Glad 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
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Welcome. This isn'tKvdyson 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 2016Welcome. This isn't necessarily a club you ever wanted to join, but the members are the best folks in the world!
You are not alone. Feel free to ask anything.
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Welcome Kim! As the othersKvdyson 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 2016Welcome 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
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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
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HisKvdyson 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 2016i 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
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Cosaltlife - FlaggingCosaltlife 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
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.
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Hello, 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
Welcome, I amHello, 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.
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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!
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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.
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
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You are rightEditgrl 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
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RadiationEditgrl 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!
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
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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.
0
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