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Change in treatment plan carcinosarcoma MMMT

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

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

 

 

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

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's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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

 

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

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's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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's picture
DrienneB
Posts: 186
Joined: Aug 2013

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's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

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

Cosaltlife's picture
Cosaltlife
Posts: 8
Joined: Jan 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 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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.

 

Cosaltlife's picture
Cosaltlife
Posts: 8
Joined: Jan 2016

Sorry about that All! 

JessicaKarina21
Posts: 2
Joined: Nov 2016

Hi Kim,

I'm new to this board as well. My mother was recently diagnosed with MMMT. We still do not know what stage because she has not gone for surgery yet. I am wondering if you (or anyone reading this) have some good recommandations on where my mom should have her surgery done? The doctor who diagnosed her has been awful between giving the diagnoses over the phone, losing paper work, scheduling surgery a MONTH after diagnoses.

Hope you are doing well and let me know how everything goes!

-Jessica

Nellasing
Posts: 529
Joined: Oct 2016

So sorry to hear about your mother :(  I don't have any recommendation for where she should have surgery but I did want to let you know that I was also told over the phone on April 4th 2016 and my surgery was scheduled for April 28th.  I know part of the delay was how busy my gyn/onc is - so many people, so much cancer! I also asked if it shouldn't be done faster and they assurred me that it wasn't going to get any worse in that short amount of time.  The waiting that goes on through this whole journey is probably one of the hardest things and getting your mind around that early will help you and your mom as you begin to find your new normal.

In the meantime we are here- there are so many wonderful ladies, with SO MUCH knowledge and experience.  It was fun (is that the right word?) reading through this thread for me when I saw your new message pop up- some of these ladies were just beginning their journey here and they have come so far by the time I joined in last month.

You are not the only daughter here and I hope you find the answers and support you need to continue to be a blessing to your mother.  Prayers and (((HUGS))) for you both.  Please keep posting and asking questions and coming back for support.  We all learn and grow that way ;)

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

So very sorry to hear about your mother's diagnosis, Jessica. I recall being in her shoes just last year. It was devastating at the time but the good news is that treatments can and do work. I have been NED (no evidence of disease) since ending treatments in May 2016.

The most important piece of advice I can give to you at this stage is to find a gynecological-oncologist (gyn-onc) who has experience treating this somewhat rare type of cancer. I was very lucky that my local gyn-onc had a lot of experience with it. If your mom's current gyn-onc does not have experience actually treating it, it may be time to call around to the major cancer centers to find one that can see your mom asap. This is not something that should wait. 

Wishing you and your mom strength and peace as you begin this journey. Please keep us updated on how she is doing. Kim

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

I had the same situation.  My gyne/onc definitely wanted me to have pelvic radiation but my radiation oncologist was against it.  He indicated that the treatment would cause more problems than if I didn't have it done.   The reason being is that I scar so much.  The scarring would cause a great deal of problems for me as I was already pretty scarred up from having endometriosis.   The came to a middle where I only had brachytherapy (3 x).   They do not know what the long term effect of radiation is so they cannot tell you that.  It can cause scarring and blockages.   And because of all of my surgeries, I have been getting more scarring too.  I did end up with a block ureter by my bladder (which my urogolgist indicated was from the brachythereapy).  I had to have a stent in for over a year until last December when I have a ureter reimplantment surgery.

My best to you.

Kathy

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

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

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

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!

 

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

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
Posts: 132
Joined: Nov 2015

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

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

You have done an amazing job of info gathering and second option dr.  The info is daunting even with explanation(at least to me!) I went through the same thing except with my heart surgerys.  I actually changed my mind while waiting to go into the operating room.  I asked one question of my heart surgent...If I were your Mother or wife, what would you do for them"?  It has served me very well and puts it more on a personal,"this is my life" level.  Good luck on your decision!  Best, Debra(Jo)
 

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

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.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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

Cosaltlife's picture
Cosaltlife
Posts: 8
Joined: Jan 2016

Hi Cindi, 

Its Cindy here too. 

I am in your same position and wonder if you made a decision  

Appreciate your insight  

best, Cindy 

 

Donswife48
Posts: 293
Joined: Nov 2015

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.

cleo
Posts: 145
Joined: Sep 2009

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.

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

I remembered that you had radiation only.  Happy to hear that you are doing well and thank you for checking in here.

Chris

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

This was something I asked my dr about as almost all the ladies on this site hadchemo and radiation.  I was concermed that I was not getting the rightt

Treatment or it was lacking something.  I am at a national cancer Institute recognized cancer treatment centers in North Texas. My case was dicussed before a board. It was determined that all known cancer was removed.  There would be chemo treatment for 6 rounds every 21 days but no radiation as it was nit proven to give any extra benefit and they would use it if there was a recurrance.  Thankfully there has not been one.   There was also the concern of radiation on the whole pelvic area and what it would do.  Since they had removed all the cancer and dne a total abdominal hysterectomy and did not see any cancer on any other organs they could not pin point one area to send adiation too.  That is the explaination my dr gave me. I did not queztion it further becUse my mom had gone through radiation 20 years before for cancer.and was put through hell so I ws not really looking forward to radiation.   Glad you asked for a second opinion so you can make an informed decision.  Trish

Editgrl's picture
Editgrl
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Joined: Jun 2015

the more I read and research, the more confused I am.  If I had an earlier stage, I am pretty sure I know what I would do, but over the last few days I have gone back and forth between having EBRT and having brachytherapy only.  And even on this board, we have women who have had radiation only, chemo only, and both with various results.  It just seems like it's a crap shoot.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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

Cosaltlife's picture
Cosaltlife
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Joined: Jan 2016

Thank you 

Editgrl's picture
Editgrl
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Joined: Jun 2015

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

Donswife48
Posts: 293
Joined: Nov 2015

I just read another posters take on pelvic radiation.  You probably read it also, but I found it interesting that her radiologist said the hip bone and bone marrow would also be radiated.  I know now, if I have a choice, I won't do it simply for the fact that I also have osteopenia in one hip, and it's become painful since I started chemo.  Also, my platelets have sunk to 135 after only 2 chemos, so I don't think my platelets would survive.  If you haven't already asked, that would be a good question.  Hope you get the answers you need to either yea or nay this.

 

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

Yes, I did see that post and I have added a question regarding that to my list.  I was able to keep my blood counts up during chemo and I'm wondering how I would fare with radiation, especially being small.  Were you able to get your chemo today?

Donswife48
Posts: 293
Joined: Nov 2015

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

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

I am so glad you had a decent time at your appointment.  Let us know if the side effects are less.  I sure wish my doctor had given me an alternative.  (((Nancy)))

Love,

Eldri

Lou Ann M's picture
Lou Ann M
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Joined: Feb 2015

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

Cosaltlife's picture
Cosaltlife
Posts: 8
Joined: Jan 2016

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

 

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

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

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Thanks so much for the update.  It is amazing that there are so many differing opinions. However, that also tells us that things are being looked at and the "standards" are being questioned. That can only mean better things down the road for those coming behind us. I'm still hopeful we will see a cure in our lifetime.

Did they discuss doing Brachy on you with no external as an option? I have had 3 out of 5 treatments and so far the worst for me has been being tired. I have my last two next week and my radiologist told me I should be rid of any side effects within 2 weeks after that. (Except the known tissue damage of course.)  Also, while I was trying to make my decision on doing this or not, he wanted me to have it done within 2 months of my last chemo and preferably within a month or so.

It really is a hard decision to make. And one thing for sure, you have done everything possible to gain the knowledge needed to make the right one for you.  Thanks again for sharing all of that with us.

Love and Hugs,

Cindi

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

Cindi, yes, they did discuss brachytherapy.  They discussed all of the options. One of the doctors was very much in favor of the brachytherapy because of the smaller field of radiation and the fewer potential side effects.   Some studies, especially in earlier stages, show no difference in outcome between brachytherapy and EBRT.

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

One of my good friends was Stage 2 UPSC.  She had chemo (6 rounds) and internal radiation.  That was now 9 years ago and no recurrence.  So go figure.  She does still get 6 monthly exams and CA-125. 

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

You have a lot to think about.  I did have all three, chemo, external radiation, and brachytherapy.  My pelvis area, the original site of the cancer has been clear, but it did Metastizise through my lymphatic system to other places.  For me the external radiation and brachytherapy were easier than the chemo Although I was absolutely terrified of it at the beginning.  My father died of lymphoma 55 years ago and had had radiation that burned a hole in his leg the size of a quarter That never healed.  Even though treatment is still not pleasant, it is not as barbaric as it once was.  I had no side effects from the brachy and did have some fatigue and Diarhea from the external.  That was pretty much controlled with a bland diet and Immodium.  It has caused problems with my bone marrow that only surfaces when I am on Taxol/Carbo.

I am finding it interesting how so many doctors have different opinions about treatment .  I guess it does show that we are all individuals and need individualiced treatment.  My Gyno-Onc  and my medical Onc argue on the phone every once in a while.  Sometimes I feel that I am the elephant that the 7 blind men were touching.  They were each touching a different part of the elephant and describing it in completely different ways.  They argue and then come up with a plan for me.

boy would I like to drive trough San Fransisco again.  Hugs and prayers, Lou Ann

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

Your comment about the blind men and the elephant seems very appropriate.  It's still amazing to me how all of these doctors with all of their experience with cancer can still come up with widely different views on what to do.

Yes, San Francisco is still an amazing city, though the demographics these days, with many young, extremely well-compensated tech people, is pushing the real estate market to ridiculous heights.  Always cool to spend some time there, though.

Chris

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

That's exactly what my GP told me - oncologists look for ways to destroy the cancer even if it means destroying the rest of your body as collateral damage.  Which, leaves her trying to decide if all the other "ailments" are just side effects of the chemo/radiation or are something she really needs to deal with.  She couldn't believe they started chemo when my blood pressure was 240/120 - that's 911 time and stroke territory....but they did (although I know my chemo nurse called my PA who came and took my BP herself).

I just noticed this weekend that some of my fingernails and toenails are coming loose and my toenails, especially, look kind of discolored.  I'm sure it's chemo induced but.....bummer!!  I don't know how you do it, Lou Ann, that much chemo would surely kill me (but I'm glad it's worked for you!!!!).

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Checking in on you.

Did you get your body back up to 3 miles? 2 miles is still very impressive.

I'm hoping you have gotten enough information to make your treatment decisions. None of it is easy to decide on!

Sending you lots of positive energy.

Love and Hugs,

Cindi

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