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Recurrence MMMT after chemo treatment. What´s next?Apparently nothing

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear warriors,

I wrote a post to thank you for your support and all the information you passed me but the outage has deleted everything, including my initial post telling my mum´s story.

Just for those who did not read it I am going to summarize the situation: my mother, 73, had an anal tumor 8 years ago (treated with surgery, chemo and radio). She had NED after all this time. But by the end of 2017 she started to bleed and diagnosed MMMT (II-3). After total hysterectomy she suffered a premature recurrence in the vagine cuff right before starting chemo so she ended up receiven 6 infussions of placlitaxol-carboplatin. Nothing visible in the PT scan and RMI but 3 months later the recurrence came back.

I was sure doctors would recommend another treatment thanks to the information that some wonderful ladies provided me in this chat. However, when we went to the oncologist everything was bad news. She said that the tumor could be "controlled" but not removed any longer. And then she prescriped hormone therapy and refused to use chemo (the last one left my mother with drammatic side effects), immunotherapy or surgery  (the gynecologists did not see it feasable). She was not much in favour of Radio/Brachy because my mother´s pelvis was highly radiated for the previous anal tumor. Then, the only thing she decided to do is a PET to check how things go and maybe consider the radiation. But, by her face, I´d bet that she is not going to recommend it.

In short it seems that everything is hopeless. I am so frustrated and devastated because I did not expect almost no treatment at all. And my mother is totally down.

I think I am going with a second opinion. In our National Health System (which is very good, in general terms) we have that option. Many people have encouraged me to do it and I think that, given the oddity of this tumor, it is worht trying. Maybe another medical team would have anothe approach. What do you think? I am starting to feel a bit desperate.

 

Thanks for all your support and all the accurate information on this horrible diasease.

 

Love

PDXmama
Posts: 17
Joined: Jan 2019

Yes for your own sake and for your Mom's sake I hope you will get a second opinion.  You should know realistically what she (and you)  is facing. No one doctor knows everything. You owe it to yourselves to use your medical benefits to get the answers you seek. I will be thinking of you both.

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

It never hurts to seek a second opinion, especcially when there is so much doubt that your mother is receiving the best care and advice. Please let us know what you learn after you've met with the new doctor.

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

Cheers originally posted her mother's story "Recurrence MMMT after chemo treatment. What´s next?" on January 21, 2019 and received several responses that day. Since those posts were lost and may provide useful information to others in the future, I've recapped them below:

Cheers originally wrote:

Hello to all you brave women,

  Right before starting my story I´d like to do 2 things: one is to apologize for my English writing. I am Spaniard and English is not my mother tongue so, please, be indulgent with me. The second one is to thank you all for your posts and the strenght you get to pass me on. They have been my spotlight through the black tunnel in which I have been immersed over the past year.

  The person with cancer is my mother. She is 73 at the moment but she had an anal cancer 8 years ago. At that time she went through a coadyuvant chemo treatment (don´t remember now the type), radiation (26-8 sessions) and a surgery that left her with a colostomy for the rest of her life. Again after surgery she received more chemo (infussion and pills) and, fortunately, she "recovered" from all this process.

  Life smiled at us and cancer seemed to be gone in every check-up. Until Oct-Nov 2017, when my mother started to spot. At the beginning doctors did not find anything but, finally, after a long story of misunderstanding and administrative incompetence (which delayed the diagnosis almost 2 months), they detected a generic adenocarcinoma. She had a total hysterectomy where the cancer turned to be another primary one: carcinosarcoma or MMMT s.II-g.3 and, according to the oncologist, "very likely" to have been caused by the pelvic radiation for the previous tumor. She, the oncologist, seemed to be very optimistic because the tumor was placed just in the uterous. In this way she prescribed 4-6 chemo sessions (carbotaxol-cisplatine), depending on her body reaction.

  However things were not gonna be that easy. 1 month after surgery, and before the chemo, the ginecologist saw something the vaginal cuff and, of course, it turned to be a recurrence. The 4-6 sessions became 6 complete ones. Well, we thought, we can accept it but at that very moment, and not before, is when I was aware on how agressive this tumor may be.

 But doctors never explained us anything about this type of tumor. Nevermind, the outcome is that my mother went thourhg the 6 sessions which left her totally devastated (serious neurophaties, lack of mobility and loss of muscle mass)

 But the worst was still to come... In all this process my mother complained about a continuous spotting. By the end of chemo the TC and MRI did not show evidence of disease but, two months afterwards (i.e. last Friday), the gynecologist found again a recurrence in the vaginal cuff, JUST 2 MONTHS AFTER finishing the treatment. How could it be possible? Now my mother and I are totally demoralized.

  At this point we are waiting for the oncologist and the gynecologist to discuss the next treatment to follow. But if chemo did not work... what can work in a case like this?

 Apparently radiation and chemo are not on the table. I have read many of your stories and it seems that other treatments have been effective for you.

 Any of you or any other person you know have had through a similar process as my mother? The only thing that gives me some hope is that, apparently, the disease has not spread. But, honestly, sometimes I have the feeling that my hopes are based on my fears, and nothing else, because this tumor speedness is really scary.

  Thank you for all the support you have sent me through the Atlantic. All the information and hope I currently have is thank to this discussion board.

  Love

 Note that MugsBugs kindly reposted this message without all the extraneous formatting code that was included by accident in Cheers' post.

  

Northwoodsgirl responded:

 Cheers,

 Thanks MugsBugs for cutting and pasting the original post from Cheers about her dear mother. Cheers if you can ask your Mother’s Oncologist/gynecologist to write down for you what treatment protocol or protocols they are considering and the probability of success. Sometimes doctor’s don’t take the time to write down and clearly explain what treatment, timeline, and what surveillance will be done as the treatment is given to determine the effectiveness.

 My heart goes out to you. My Mother also suffered from uterine cancer at the age of 72 years old. She sadly didn’ t survive. I wish I knew then what I know now about uterine cancer and treatment options. There is a website in the US referred to as “NCCN” that has cancer treatment protocols by type of cancer. That site shows how reoccurrences are treated using a standardized treatment plan. The other thing of course is to ask about clinical trials that may help your Mom increase her chances of survival

 I didn’t have MMMT type of uterine cancer but others who do will hopefully see your post and respond  I hope that someone from the American Cancer Society Discussion Board will be able to eliminate the strange formstating at the beginning of your original post.

 

CMB responded:

 MMMT Recurrence

  As you and your mother have sadly learned, uterine carcinosarcoma (MMMT) cancer is an aggressive and very unpredictable type of uterine cancer. And because it is rare without a lot of dedicated clinical trials, there are variations in the treatments followed by different doctors.

  While carbotaxol-cisplatine are some of the chemo drugs used for uterine carcinosarcoma, unfortunately some patients, like your mother, don't respond to this combination. There are other chemo drugs used for recurrences of MMMT, such as Ifosfamide or Doxorubicin, but these regimens are a lot tougher on a patient's system and they may not be suitable for your mother now, given her current health condition

  Immunotherapy may be feasible for your mother if she meets certain criteria. For example, Keytruda (Pembrolizumab) can be used for recurrences after initial treatment, if the patient's tumor is shown by a laboratory test to be a microsatellite instability-high (MSI‑H) or a mismatch repair deficient (dMMR) solid tumor. This isn't common for MMMT patients, but it's certainly worth pursuing when conventional chemo drugs have failed.

  Tumor testing can also be used to identify other possible therapies, even if your mother's tumor is not MSI‑H or dMMR. One person on the Yahoo group for uterine carcinosarcoma (https://groups.yahoo.com/neo/groups/UterineMMMT/info) has written about using a testing lab in Europe – the RGCC Group. Since I'm in the US, I don't have personal knowledge about this company, but you can read more about it at:

  https://www.rgcc-group.com/

  Your doctor may use another lab in your country that does the same type of testing. Or the doctor may suggest other treatments. But given that the cancer is still localized, there is hope that this can be contained if the most appropriate therapy can be identified.

  This is such a difficult time for your mother and her family. She's lucky to have such a strong advocate in you.

 

Janaes responded:

 Hello, welcome to our wonderful group. I'm sorry you need to be here but its a very supportive group. I was diagnosed with MMMt uterine cancer stage 2 grade 3 May 2016. I had 6 rounds of chemo andd 3 bracytherapy apointments. So far i have had no evidence of desease.

  Im so sorry your mom has had a reacurance. That is not fun. Im glad you have been able to read others post and feel hope still. There are other options.

  I had a different cancer 20 plus years ago. I had alot of radiation right above my abdomen. The cancer was called Hodgkins lymphoma. Any ways my oncologyst told me my uterine cancer was caused by the radiation from my hodkins lymphoma. Some people choose to do external radiation fot MMMt cancer. My doctor and i chose to not to do it for me. I was good with that.

 Any ways I wish you and your mom the best as you go forward.

janaes
Posts: 752
Joined: May 2016

Tanks for the information on this thread. Cheers thanks for re typing your story. I really do hope you go get another opinion about your morher. The other ladies ar right when they say doctors dont no every thing. I saw 3 doctors befor i started treatment for my MMMt. I got mixed messages from different doctors and i wasnt going to be satisfied until it felt right for me. Let us know what happens as you go forward.

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear warriors,

thanks a lot for your warm responses every time I write someting in this forum.

It is not that I do not trust my mom´s doctors, but I have the impression that this type of cancer is not common for them at all.

I am currently seeking information about where to go for the 2nd opinion. For the moment I have found 2 hospitals in our city with departments specialized in sarcomas. I am trying to contact them in order to know if the MMMT could fit in the type of tumors they normally lead with. I will keep you posted.

Love

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

Try these folks, I've found their site to be very helpful (even though I don't have MMMT)

http://gcsproject.org

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear warriors,

thanks a lot for your replies. Always rescuing me from the darkness!

DeMaus I knew already the GCS site and posted in the forum to get some advice. For the moment no news.

I would like to share something with you because this week has been quite depressing for me. My mother had a PET test on Wed and we will have the oncologist appointment next Monday. We are feeling a great anxiety because we do not know if the tumor could have gone somewhe else and because her onc closed down almost all the possible therapies for my mother last time we saw her. Radio was not dismissed 100% but by her face I´d bet that she does not beleive in its efficacy(besides my mother was already radiated a lot in the previous cancer and it was the cause of this dammed one).

I do not know how to explain but all the doctors I have met so far have transmitted ame by their faces that there is nothing to do with my mother. It is so depressing! Even an acquaitance of mine, who is a ginecologist, has put that horrible face of "your mother is already dead". In this scenario it´s been really difficult for me to try to be positive for my mother. I just wish I could find another person with a more kind view of the situation, but I feel that maybe there is really no hope and I am lying myself. Did you have similar experiences as mine?

Sorry for the darkness of this post but we do not stop from receiving bad news.

Love to all of you

janaes
Posts: 752
Joined: May 2016

I am so so sorry to hear about your mother.  Im not sure if i told you this before but my uterine cancer was my second cancer and it was caused by the radiation given to me for my first cancer. Its okay to feel angry about your situation. I sure was. I decided not to do radiation for my uterine cancer partly because i didnt feel doing exteral radiation would increase my servival chances. I thought to myself, " well if i use more radiation it could cause another cancer and if i dont i could get cancer for not doing external radiation." Plus my doctor wouldnt do radiation because it would be close to the same area as before. 

It sounds like you have since talked to more doctors. Is that right? I hope you do talk to all doctors you can. Do what you feel is best. This im sure it is a hard time for you and your mom. What is your mom feeling? What is she wanting to do? I hope others will chime in too. 

We are here for you guys no matter what happens. Keep comming here for support. 

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

I understand that it very hard to wait, but you won't know more until the meeting with the oncologist on Monday to learn the results of the PET scan. If that test shows the cancer is still localized, then I would ask the doctors to explain more completely why they don’t think it can be treated.

I understand that radiation may not be possible and her previous chemo was clearly not effective. Are they afraid that trying another chemo drug or even immunotherapy (if she meets the criteria for that treatment) will worsen her condition? And would that really be worse than doing nothing – which, given the aggressiveness of her cancer, will undoubtedly make things worse?

And janaes' point about how you mother is feeling is the most important part of this process. Does she want to continue treatment, even if the prognosis may be poor? Or would she rather be made as comfortable as possible during this time so that she can enjoy her life without worrying about treatments?

I've had two parents who struggled with cancer, with my father dying from colon cancer and my mother dying from the long-term side effects of her treatment. So I know how difficult it is to watch a loved one go through this. But ultimately the decision about how to proceed has to be the patient's, no matter how much we love them.

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear Janaes and cmb,

really thank you for your support. How few words can change our state of mind.

Answering your questions I would not know what to say about my mother´s feelings. Sometimes she feels very discouraged because doctors show low optimism regarding treatments. However, as I try to do, she is waiting for a bit of light coming from another treatment, whatever it is. The oncologist said that the tumor could not be removed but just "controlled", but do not know to what extent my mother understood or even heard this statement that meant "incurable". And, no doubts, I am not going to be the one to bring up the subject on this respect to make her feel worse. For the moment I am waiting for tomorrow to see what the oncologist thinks about the PET and, almost 100%, I will go for the second opinion asap (the NHS in Spain opens the possibility of this although with a lot of paperwork in the between). Someone from the GCS project wrote me to figure out where we live in the country so that she could search for specialized doctors on this type of tumors.

Regarding the treatments the explanation the oncologist gave us was that the ginecologists refused the surgery (without further explanation), immunotherapy was not effective in this type of tumor, chemo was too toxic for the "amount" of disease (I guess this is an euphemism to say that it could kill you even faster than the cancer) and radiation of any kind was not effective either (!). I replied her that I had met many women  (you) with the same disease as my mum´s and they received some radiation (i.e. external or/and brachy) and she said that sure they didn´t have the same one as my mother (?). I assume that each one has its particularities, but I did not expect such a lack of resources to deal with it, to be honest.

Cmb you are right when you say that my mother has the final decision. At this moment I keep some hope with the coming results and the second opinion and try to cheer her up based on these prospects. However I always ask her what to do before doing anything because I do not want to put pressure on her. I have seen her suffering so much in the previous tumor and in this one that I could perfectly understand her reluctancy to more treatments or tests, in case of no other possibilities.

Thank you anyhow for the remark and sorry for your parents. It is horrible to go through something like this with both parents. In my case I lost my father when I was a child but it was pretty unexpected and fast, but tramutic though.

I will let you know tomorrow´s results.

 

Love

 

janaes
Posts: 752
Joined: May 2016

Sounds like your doing good. On step at a time is great.  

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear warriors,

I would like to update you about my mother´s condition. I told you that I was going to search for a second opinion from a gynecologist because our doctor did not give us much options regarding treatments. In the meantime my mother had a PET-CAT in which there was no evidence of disease in any other part of her body (thanks God!!). So her oncologists sent my mother´s file to the radiologist to check if she could receive some radiation in the recurrence (because she had a lot of radiation for the previous tumor). For the moment no news in this respect. In addition to this the oncologist was willing to help us with the second opinion and she will conctact another hospital for it. I am glad that things go forward, though we don´t know yet if the rardiation could be used on my mother. Let´s see if all of this will work out eventually. I has to because there are not other treatments on the table.

Thanks a lot for your supporting words. It really means a lot to me.

 

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

Yay for the PET results!!! I continue to be so happy that your mother has such a wonderful daughter advocating for her.

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

I'm so glad to hear that your mother's cancer is still localized. I hope the second opinion doctor can suggest a reasonable path forward.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2572
Joined: Mar 2013

Cheers, glad to hear you found someone who is willing to work with your mom.  

janaes
Posts: 752
Joined: May 2016

I hope it goes well with the second opinion. Im glad they are working with you on that.

candy546
Posts: 10
Joined: Feb 2019

I'm really sorry you have gone through so much stress but I have read that there are alternative therapies that sometimes work for people using certain herbs and supplements and restricting certain foods that contain glucose and glutamine.  If the doctors cannot come up with a plan, I would at least try it to see if there is any hope.  There is a guy named Christopher Wark who talks about this and a researcher out of Boston College named Seyfried who you can find on YouTube and they have books as well.   I'm using conventional treatment right now, but if that fails, I will try a natural option.  I think it works for some and not for others but its worth a try when the conventional way fails in my opinion. Maybe there are some members who have some experience in this.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2572
Joined: Mar 2013

Some ladies have worked with naturopaths, and while it has helped them, it has not made a huge change, unfortunately, in some of the outcomes.  A quick google search will provide information on the good and bad of some of these folks.  I am always sickened to see how people have stolen from desperate people during desperate times.  It is despicable.  

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear Candy546,

I agree with NoTimeforCancer regarding those "naturopaths" who take advantage of desperate people. However I beleive that human bodies work in a more holistic way than traditional doctors are willing to admit and research about.

Before starting the chemo I went to an integrative doctor with my mother and she prescribed her a very restrictive diet and a lot of supplements/vitamins. But I don´t beleive in alternative healing options, unfortunately. I wish that could be true.

For the moment no news from the radiologists or the second opinion. Starting to feel a bit anxious.

 

 

Thank you ladies for the support.

janaes
Posts: 752
Joined: May 2016

Is the doctor supposed to call you about the second opinion? Did theu tell you how that info was to get to ypu?

Hope you know soon

MAbound
Posts: 854
Joined: Jun 2016

I'm not an all or nothing girl, I stick with traditional, proven treatment, but believe employing alternative practices like meditation, accupuncture, hypothermia, etc. has its place for helping to support us through treatment and cope with side effects afterwards without always having to resort to drugs. Saying that, I 100% agree with what No time and Cheers said that a lot of care needs to be taken when going down a path without research or regulation to safeguard you. It's the wild west out there with lots of snake oil salesmen that are hard to tell apart from those who aren't. Be very careful.

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear warriors,

finally we received a call from our onc saying that my mother was accepted in another hospital for Brachytherapy (Anyone could give me some guidance about this therapy, by the way?). She also mentioned that my mother´s case was going to be discussed in the multidisciplinary team of that hospital so that they could assess also a possible surgery. But, for the moment, we are waiting for the appointment for brachy.

Now my fear is that she could suffer with this therapy and, also, how effective it may be. As far as i know the radiology/brachy are used to prevent MMMT´s recurrence. But what about chemo failing and being the next therapeutic option? According to the information I have read this kind of tumor is not sensible to radio. Any idea? Sorry for so many questions but they don´t stop to pop out in my mind.

Thank you again for your support. It kept me strong in very harsh moments.

Love

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

Cheers,

First of all, it's great to hear that your persistence in seeking a second opinion has paid off and your mother will be able to have brachytherapy. Not all women have radiation as part of their initial treatment, preferring to hold this option in "reserve" for a recurrence. So having radiation now isn't unusual, especially since her cancer is still localized to the vaginal cuff. I'm glad that the radiologist can work around the parts of her body that previously received radiation for her anal cancer years ago. This seems like a very reasonable and positive next step.

I had external pelvic radiation, not brachytherapy, so I can't speak to the side effects of that treatment. Hopefully some of the women who had brachytherapy can report on their experiences. I also suggest searching for "brachytherapy" or "brachy" in the "Search by Title" box at the top of the topic list for some other posts on this subject.

I know that this is a very difficult time, but it really is good news that your mother's cancer is still localized and can be treated with brachytherapy. While none of us with cancer know the ultimate outcome of our fight with this disease, we all value the family members and friends who support us with their love and willingness to work with the medical professionals on our behalf when we can't.

janaes
Posts: 752
Joined: May 2016

Bracytherapy was a breeze to me compaied to chemo. Some women have some side effects but i didnt. The proceedure itself was uncomfotable but once it was over it didnt have to think about it again until the next week when i had another treatment. I had 3 high dose treatments. They were once a week. It was over before i new it. Its bbeen a while so i cant remember the details of the accual treatment so hopefully others can tell you about that.

Im glad you have something to do go forward with.

Cheers's picture
Cheers
Posts: 9
Joined: Feb 2019

Dear warriors,

as always thanks a lot for your answers.

For the moment we are waiting for the new Hospital´s call for the brachy´s appointment. In the meantime life seems normal... Something that is a bit unreal but provides us with some sort of serenity to go on. However, my mother is divided between wanting to be called right away and not being called at all. I assume it is totally normal for all of you.

Thanks cmb for being so attentive with me and with the rest of patients/relatives with MMMT, you are doing so much good to us than many doctors/psychologists and/or relatives:-) It is true that the fact that the cancer is localized and treated are good news, but I cannot stop thinking how fast she had a recourrence and if the brachy will be effective (in previous appointments the onc mentioned that this type of tumor is not very sensible to radiaton). Let´s see...

Janaes... Your testimony is really helpful. Thanks a lot!! I will tell my mother. After so many treatments and tests she is really terrified about the prospect of a new one. She had external radiation in the past, but she does not know what to expect from brachy.

Let you know once my mother starts brachy.

Love

janaes
Posts: 752
Joined: May 2016

I remember the nurses were so good to me at the bracy appointments. I do remember at one of the appointments. I think it was the last one. They let me pick qhat songs i wanted to listen to as i was doing some of the procedure. 

I hope you hear from the hospital soon. Im glad you two seem to be getting onto normal life. It does make things easier when you can do that. 

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