Change in treatment plan carcinosarcoma MMMT

13

Comments

  • Editgrl
    Editgrl Member Posts: 903 Member
    #42
    TeddyandBears_Mom said:

    Chris

    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

    Brachytherapy

    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.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #43
    Editgrl said:

    thesecondopinion

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

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

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

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

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

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

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

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

    Hugs, ladies.  Keep fighting the good fight!

    Chris

    Thanks for the update

    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
    Editgrl Member Posts: 903 Member
    #44
    Lou Ann M said:

    Thanks for the update

    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

    Lou Ann

    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
    EZLiving66 Member Posts: 1,482 Member
    #45
    Lou Ann M said:

    Thanks for the update

    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

    That's exactly what my GP

    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

  • SandyD
    SandyD Member Posts: 130
    #46
    Decision about radiation

    I'm still at the beginning of my journey (Stage 1A carcinosarcoma (MMMT) and papillary serous), had hysterectomy 11/18/15, just had 2nd chemo infusion. Both of the doctors I have seen, the gyn oncologist at Dana Farber who operated and who I'll receive long-term follow-up from and the gyn oncologist here in Maine (at Maine Med Center) who's supervising my chemo are both suggesting that I consider radiation. The doctor here in Maine is encouraging me to set up an appointment with the radiation oncologist to discuss it. He seemed to be leaning more toward the brachytherapy. From what I can see online the research results seem rather inconclusive and the more I'm learning about potential effects such as bladder control problems the more hesitant I become. On the other hand I want to give myself every advantage of ensuring no recurrences. Sharing what you're learning about this treatment is so, so helpful to me in making a decision and I thank you for your contributions!

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #47
    EZLiving66 said:

    As far as I know, we have

    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

    Stage II

    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. 

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #48
    SandyD said:

    Decision about radiation

    I'm still at the beginning of my journey (Stage 1A carcinosarcoma (MMMT) and papillary serous), had hysterectomy 11/18/15, just had 2nd chemo infusion. Both of the doctors I have seen, the gyn oncologist at Dana Farber who operated and who I'll receive long-term follow-up from and the gyn oncologist here in Maine (at Maine Med Center) who's supervising my chemo are both suggesting that I consider radiation. The doctor here in Maine is encouraging me to set up an appointment with the radiation oncologist to discuss it. He seemed to be leaning more toward the brachytherapy. From what I can see online the research results seem rather inconclusive and the more I'm learning about potential effects such as bladder control problems the more hesitant I become. On the other hand I want to give myself every advantage of ensuring no recurrences. Sharing what you're learning about this treatment is so, so helpful to me in making a decision and I thank you for your contributions!

    SandyD

    I just finished my final Brachy treatment yesterday. I documented my journey under the 'Let's talk about Radiation'  thread.

    So far, I haven't had any side effects except being tired. And, the actual procedure while a bit uncomfortable, is not painful.

    The reason I made the decision to go forward with the brachy is exactly what you stated - I wanted to do everything I could to prevent a recurrence.

    Good luck on your journey. You will get there and come out stronger on the other side.

    Love and Hugs,

    Cindi

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #49
    So difficult, perhaps impossible, to

    decide what the best course of treatment is! We do the best we can to decide how much and what type of treatment (Tx) we require to survive. Each one of us- may I add incredible and fantastic women!- must come to terms with our circumstance and move forward. Just like you, Chris, I learned that I had an advanced stage and grade of uterine cancer, in my case serous, stage 3a and always a grade 3 or most aggressive cancer when it comes to metastasis. My cancer was high up in my uterus-nowhere near my cervix or vaginal cuff. Research shows that brachytherapy increases the odds of disease free survival for ALL stages of UPSC. In spite of that and in lieu of my specific circumstance, two gyne/oncologist told me that my chance of developing cancer in my vaginal cuff was small. My primary surgeon said that WART- whole abdominal radiation therapy- would cause WAR on my internal organs and likely deminish my quality of life. Brachytherapy was not recommended for me as I had clean margins (with regard to the tissues removed during my hysterectomy) and the chance of developing Ca on my vaginal cuff was 10% or less. Remember ladies that we can have a part of our bodies radiated only ONCE. So, I reasoned correctly or incorrectly that I would rather wait for the Ca to show up on my vaginal cuff before radiating healthy tissue. 

    I don't know if this horrendous cancer will eventually kill me. We all think about that possibility every single day that we greet the morning sun. No one I know- except you extraordinary women- have the slightest clue to how terrifying our situation is. The well-meaning and ignorant people in my life may tell me that I must have a positive attitude to survive this. I tend to be a happy person. I say BULLS**T! Yes, it angers me to hear such stupidity. It is no different then telling a person that they can survive and be cured of ALS, Diabetes Militus, COPD, severe heart disease, intellectual disabilities, severw mental illness, etc, just by thinking optimistically. Let's keep "magical thinking" reserved for children.

    Now, having said that, I do recognize the importance of facing each day with joy and wonder regardless of what the future may hold. We shouldn't allow our diagnosis to rob us of the joy we may experience here and now. Now, that I DO believe is true!!

    Much Love to Each of You,

    Cathy

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #50
    Abbycat2 said:

    So difficult, perhaps impossible, to

    decide what the best course of treatment is! We do the best we can to decide how much and what type of treatment (Tx) we require to survive. Each one of us- may I add incredible and fantastic women!- must come to terms with our circumstance and move forward. Just like you, Chris, I learned that I had an advanced stage and grade of uterine cancer, in my case serous, stage 3a and always a grade 3 or most aggressive cancer when it comes to metastasis. My cancer was high up in my uterus-nowhere near my cervix or vaginal cuff. Research shows that brachytherapy increases the odds of disease free survival for ALL stages of UPSC. In spite of that and in lieu of my specific circumstance, two gyne/oncologist told me that my chance of developing cancer in my vaginal cuff was small. My primary surgeon said that WART- whole abdominal radiation therapy- would cause WAR on my internal organs and likely deminish my quality of life. Brachytherapy was not recommended for me as I had clean margins (with regard to the tissues removed during my hysterectomy) and the chance of developing Ca on my vaginal cuff was 10% or less. Remember ladies that we can have a part of our bodies radiated only ONCE. So, I reasoned correctly or incorrectly that I would rather wait for the Ca to show up on my vaginal cuff before radiating healthy tissue. 

    I don't know if this horrendous cancer will eventually kill me. We all think about that possibility every single day that we greet the morning sun. No one I know- except you extraordinary women- have the slightest clue to how terrifying our situation is. The well-meaning and ignorant people in my life may tell me that I must have a positive attitude to survive this. I tend to be a happy person. I say BULLS**T! Yes, it angers me to hear such stupidity. It is no different then telling a person that they can survive and be cured of ALS, Diabetes Militus, COPD, severe heart disease, intellectual disabilities, severw mental illness, etc, just by thinking optimistically. Let's keep "magical thinking" reserved for children.

    Now, having said that, I do recognize the importance of facing each day with joy and wonder regardless of what the future may hold. We shouldn't allow our diagnosis to rob us of the joy we may experience here and now. Now, that I DO believe is true!!

    Much Love to Each of You,

    Cathy

    (((Cathy)))  You are right,

    (((Cathy)))  You are right, nobody really knows what the future holds.  My 37 year-old brother dropped dead in front of his two kids three hours after having an MRI at a local hospital.  He thought he had pulled a muscle in his left arm.  

    I try to live my life as "normally" as possible even with this d*mn cancer hanging over my head.  But as I've always said, I value quality over quantity.

    Love,

    Eldri

  • Editgrl
    Editgrl Member Posts: 903 Member
    #51
    Finishing the process

    So since I started this thread, I thought I'd post what the final treatment plan is, even though it's been mentioned in other posts.

    Short answer is I have decided to have the brachytherapy only.  Out of 8 doctors, none could or would say that for me, external would give me a clear advantage.  Though I had actually gone through the simulation for external, when it got right down to it, it just did not feel "right" for me.  I listened to the audio recording of my panel, and it was notable to me how uncertain they were as to the role of pelvic radiation for me. So I changed the plan and in addition to the brachytherapy, I will be working with a well-regarded naturopath to help my body resist recurrence.

    This has been the most nerve-wracking experience of my cancer treatment so far, and now that I've made the decision, I feel so much better.  I went in to get "measured" today and will have my first treatment next week.  Let's get all this treatment over with!

    Chris

     

     

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #52
    Editgrl said:

    Finishing the process

    So since I started this thread, I thought I'd post what the final treatment plan is, even though it's been mentioned in other posts.

    Short answer is I have decided to have the brachytherapy only.  Out of 8 doctors, none could or would say that for me, external would give me a clear advantage.  Though I had actually gone through the simulation for external, when it got right down to it, it just did not feel "right" for me.  I listened to the audio recording of my panel, and it was notable to me how uncertain they were as to the role of pelvic radiation for me. So I changed the plan and in addition to the brachytherapy, I will be working with a well-regarded naturopath to help my body resist recurrence.

    This has been the most nerve-wracking experience of my cancer treatment so far, and now that I've made the decision, I feel so much better.  I went in to get "measured" today and will have my first treatment next week.  Let's get all this treatment over with!

    Chris

     

     

     

    how many Chris?

    Are they doing the standard 3?

    I'm glad you are at peace now. You made the right decision for you!

    I thought about you a lot today and wondered if they did your first treatment after the measurements. So, I'm glad you posted to let us know.

    The actual procedure is easier than the measurement one. Goes pretty fast.

    By the way, I saw my local oncologist yesterday and my white blood count had gone down a bit after the Brachy. So don't be surprised if that happens to you.

    I hope this goes as easy for you as it did for me.

    Love and Hugs,

    Cindi

     

  • Editgrl
    Editgrl Member Posts: 903 Member
    #53
    TeddyandBears_Mom said:

    how many Chris?

    Are they doing the standard 3?

    I'm glad you are at peace now. You made the right decision for you!

    I thought about you a lot today and wondered if they did your first treatment after the measurements. So, I'm glad you posted to let us know.

    The actual procedure is easier than the measurement one. Goes pretty fast.

    By the way, I saw my local oncologist yesterday and my white blood count had gone down a bit after the Brachy. So don't be surprised if that happens to you.

    I hope this goes as easy for you as it did for me.

    Love and Hugs,

    Cindi

     

    Yes, 3

    I didn't know about the lowered WBC.  Well, I'll see my oncologist a couple of weeks after I'm finished with brachy, so we'll see.

    Yeah, the measurement wasn't a lot of fun, but...  it was far more comfortable than the exam that was done back in October, so that Cool Cone really did help me.  Guess I'll order some more for my after-care.

    BTW, my radiologist told me one of the things that determines the length of each treatment is the age of the radioactive source.  Apparently that is replaced every few months.  As the strength of the source declines, the length of the treatment increases to ensure the same "dosage" is delivered each time.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #54
    Editgrl said:

    Yes, 3

    I didn't know about the lowered WBC.  Well, I'll see my oncologist a couple of weeks after I'm finished with brachy, so we'll see.

    Yeah, the measurement wasn't a lot of fun, but...  it was far more comfortable than the exam that was done back in October, so that Cool Cone really did help me.  Guess I'll order some more for my after-care.

    BTW, my radiologist told me one of the things that determines the length of each treatment is the age of the radioactive source.  Apparently that is replaced every few months.  As the strength of the source declines, the length of the treatment increases to ensure the same "dosage" is delivered each time.

    length of treatment

    Mine increased in seconds each time. So I started out at 4 min 15 seconds and by the 5th one was at 4 min 40 seconds. (Not exactly those times but close)

    So much science behind all of this!

    I plan to use the cool cones as well. I'll start that in one more week. And, I told my onc that I would use the normal ones too as a compare and provide him feedback.

    He may order some of the cones if there is a big difference.

  • Cucu me
    Cucu me Member Posts: 213 Member
    #55
    TeddyandBears_Mom said:

    length of treatment

    Mine increased in seconds each time. So I started out at 4 min 15 seconds and by the 5th one was at 4 min 40 seconds. (Not exactly those times but close)

    So much science behind all of this!

    I plan to use the cool cones as well. I'll start that in one more week. And, I told my onc that I would use the normal ones too as a compare and provide him feedback.

    He may order some of the cones if there is a big difference.

    Good luck to you!

    Teddyandbears and Editgrl,

    I remeber when you came to this site.

    Wish you the best from your treatments and no recurrence.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #56
    Cucu me said:

    Good luck to you!

    Teddyandbears and Editgrl,

    I remeber when you came to this site.

    Wish you the best from your treatments and no recurrence.

    Thanks Cucu

    I remember too! And so glad I did.

    How are you holding up? Have you found good doctors in NY?

    What is your plan - or are you still waiting for something?

    Stay strong and please keep in touch.

    Love and Hugs,

    Cindi

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #57
    Cosaltlife said:

    Sending positive energy

    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

     

    Hi Cindy

    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

  • JessicaKarina21
    JessicaKarina21 Member Posts: 2
    #58
    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

    Hi Kim,

    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
    Nellasing Member Posts: 528 Member
    #59
    JessicaKarina21 said:

    Hi Kim,

    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

    Hi Jessica

    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
    Kvdyson Member Posts: 789
    edited November 2016 #60
    JessicaKarina21 said:

    Hi Kim,

    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

    So very sorry to hear about

    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

  • Cindyr941
    Cindyr941 Member Posts: 3
    #61
    diagnosed MMMT 11/10/16

    Hi all, I'm new here.  Trying to follow posts in this thread, in search of most recent, however I see nothing newer than Feb 2016???  Posts don't seem to be in date order.  I just had my hysterectomy last week with removal of ovaries, omentum & lymph nodes.  Waiting for results of biopsy, especially lymph nodes and the ONC GYN will go over staging, grading and plan of care.  Would love to hear from any of you who have had good (or bad) results from various post-op treatments.  Wishing all of you favorable long-term results.  - Cindy

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