MMMT complications (met @ bone)

wynterpeak

Hello everyone. 

I'm keeping this short for now because I'm currently emotionally overwhelmed by my mother's diagnosis. But hello -- I am a new member of this board. 

My mother was recently diagnosed with stage 3c MMMT, grade 3. Had total hysterectomy and we were told that it had spread to 3-4 lymph nodes (all affected parts removed), but omentum and other organs were unaffected.
Today however during a follow-up visit to the doctor after 2 chemo injections (carboplatin + placi...something. all this medicine naming is beyond me right now) we were told that there was a tumor (3cm) growing in her pelvic bone.

I waited for my mother to leave the room and the doctor elaborated saying that her cancer is not curable, left her with about an average of 1 year's time left...I am blanking out. I don't know how to tell her this. We were already dealing with her breast cancer, then this MMMT came, and now to have this news that it'll be fatal now...

I guess I'm trying to ask for help; should I prepare myself now that I know that it can "only be controlled, not treated"? Is this actually the truth?? Has anyone been diagnosed with this complicated sickness before? Or known anyone with this? 

Wynter

wynterpeak

Add: 

Add: 

I've not been able to ask the doctor if this means it's progressed from stage 3 to 4, although I suppose she meant that. 

She did say that the cancer markings in her blood had gone from 34 down to 29, which is a good sign after 2 chemo injections. But at the same time knowing that this doesn't even matter is making me want to cry 

Armywife

Hugs and Welcome

Wynter, we are here for you.  This is an awfully big pill to swallow for all of you.  I wish the doctor had explained things fully to your family rather than letting that burden fall on you.  Regardless, we have a favorite saying around here - "you are a statistic of ONE."  So the doctor may be guessing a year, and you may be fearing a year, but every day of our lives is in God's hands.  There are MMMT survivors here who have lived many more years than just one.  Your mother sounds like an amazing warrior, surviving breast cancer already and now facing this.  I'd encourage you to breathe deep and just face one day at a time. Today is the most important.  When we wake up tomorrow, that will be the most important.  Love your  mom - bring her joy every day.  Keep fighting.  Trust God.  Get a second medical opinion.  Hugs to all of you.

Jairoldi

What Armywife said

I second what Armywife said so beautifully.  I'll add that my doc said to me, and she told me that she says this to everyone, make sure your paperwork is in order, live life to the fullest without going bankrupt, and take each day as it unfolds. Being prepared for the worst allows me to hope for the best and enjoy my life each day.

janaes

Hello. Im so sorry you are

Hello. Im so sorry you are goung through this hard time. I was diagnosed with MMMt uterine cancer stage 2 grade 3.  Ive been done with treatments almost two years now and so far so good. I realize your mothers stage is larger and that is different.  I wish you the best and recommend you join the MMMt yahoo group.  I cant remember the web adress but i know its still around because i still get emails. I will try too look into for you. I do remember youll need to be aproved.  I had to just write why i wanted to join.  There are people who servive this.  

janaes

Yea i just put in to google

Yea i just put in to google MMMt uterine cancer yahoo group and one of the opions was the group

NoTimeForCancer

dear wynterpeak, I am so

dear wynterpeak, I am so sorry to hear about your mom's diagnosis and what your family is going through.  My heart breaks for you.  No one knows how it will all turn out or how much time any of us have.  I would suggest letting your mom take the lead.  Let her tell you what she wants and take that path.  My prayers are for your family.  

MAbound

It's not easy

I'm so sorry that your mother and your family is having to deal with a second cancer, especially one of the more aggressive forms of it.

Are they talking about doing any radiation to the bone tumor or are they just going to do chemo?

You've already gotten some really helpful advice from some ladies who have experience I don't have with the rarer forms of uterine cancer, but please take some hope from the fact that they are still here to offer it and that this is not necessarily an immediate death sentence just because one doctor is guessing she might only have a year left. None of us come with experiation dates and often surprise the doctors with how much life we have left in us in spite of their guesses. You might want to consider getting another opinion on your mom's options for keeping the cancer under control. It's possible to live with this cancer like it's a chronic disease (think diabetes) even if it's no longer curable. Treatment, especially if it last longer than routine isn't easy, but it can be worth it for the good days it brings.

cmb

Late stage MMMT (uterine carcinosarcoma)

I just want to second Janaes' advice to join the Yahoo MMMT group. The website address is https://groups.yahoo.com/neo/groups/UterineMMMT/info

As MAbound said, a late stage, aggressive cancer may not be curable, but there are long-term MMMT survivors that live with the cancer as a chronic disease, depending upon their receptivity to the different treatments available.

But I agree with NoTimeforCancer – ultimately the decision on how to proceed rests with your mother. She'll need the support of you and the rest of the family, no matter what path she chooses.

Northwoodsgirl

Wynterpeak

I too am very sorry your Mom has received this diagnosis. Each of us are unique but we also have commonalities. The fact that the cancer is in your Mom’s bones is very concerning.

You may want to ask her GYN/ONC about radiation to the bone if nothing else for palliative reasons because bone cancer can be very painful.

Your Mom may or maynot even want to talk about her life expectancy with anyone other than her doctor and husband.  My Mom had uterine adenocarcinoma that spread to her bones and adrenal gland. She underwent palliative radiation to her bone cancer. My Mom never talked with me about her prognosis. She chose to turn inside with her dealing with cancer. She never complained about anything. Everyone is different as they deal with the diagnosis and their own mortality. 

Take care of yourself so you can help your Mom as she decides what she wants for treatment, quality of her life and well-being. 

There will be lots of tears as you help your Mom deal with this. My heart goes out to you and your Mom and your whole family....

Lori

derMaus

Dedicated MMMT Website

I've posted this before but couldn't find it, so here it is again. Maybe I should start a new thread so it's easier to find, as the name of the website doesn't automatically come up first on a Google search? I find this site is very helpful, despite my not having this particular diagnosis. I particularly liked the videos. Hope this is of some use to you. Best wishes, B

http://gcsproject.org

wynterpeak

MAbound said:

It's not easy

I'm so sorry that your mother and your family is having to deal with a second cancer, especially one of the more aggressive forms of it.

Are they talking about doing any radiation to the bone tumor or are they just going to do chemo?

You've already gotten some really helpful advice from some ladies who have experience I don't have with the rarer forms of uterine cancer, but please take some hope from the fact that they are still here to offer it and that this is not necessarily an immediate death sentence just because one doctor is guessing she might only have a year left. None of us come with experiation dates and often surprise the doctors with how much life we have left in us in spite of their guesses. You might want to consider getting another opinion on your mom's options for keeping the cancer under control. It's possible to live with this cancer like it's a chronic disease (think diabetes) even if it's no longer curable. Treatment, especially if it last longer than routine isn't easy, but it can be worth it for the good days it brings.

Heya, thank you for replying

Heya, thank you for replying to me. They are seeing that the cancer markers in her blood have gone down so they will proceed onwards with chemo, that is, 6 cycles - 18 injections, in hopes of controlling the tumor growth in the bone.

Radiation was scheduled after these chemo sessions before the tumor discovery in her pelvic bone, so I'm honestly not sure what the doctors might change. 

I have unfortunately not been able to break this news to my mother; she doesn't know that the doctor gave her this prognosis; she still thinks she's in Stage 3C. Honestly the doctor didn't straight up say that it's advanced past that into 4.
In fact, this morning she called: what she says is that to do a biopsy would require my mother to miss 1 or 2 chemo injections and we shouldn't do that "since it's highly suspicious anyway".   

 

wynterpeak

thank you, everyone

Hello again, woke up to much-needed warmth and support. Neither my mother nor I have many friends, and she's of the opinion that she'd rather not tell friends or relatives besides the closest (me, her sister etc.). Thank you all so much. 

The doctor called me this morning and

1. scheduled another MRI scan 
2. told me that the tumor was reported to be "suspicious" but there's no confirmation that it's 100% mmmt-related. (the MRI report also said "disease relation suspected". 
3. reshuffled chemo cycles - reason was to keep up her stamina for a Long Term battle and not have her miss any treatment bc of low blood cell count etc. 

I'm still bracing myself for the worst but I'm kind of angry at the doctor for saying, straight up "your mother probably has 1 year" when she doesn't EVEN KNOW IT'S 100% BONE METS?? 

Also sorry if I sound really off-putting and curt, I'm still trying to get over my emotions for the time being. But from the bottom of my heart thank you for the kind words. I really REALLY appreciate them, and you all. 

evolo58

I agree with many doctors today

who do NOT give life expectancies. That seems to be trend with many, and I fully agree. This is the way to go. This beast affects everyone too differently to predict. I do not advocate sugar-coating, but no doctor has the right to take away a patient's hope. Period. End of story. 

I also like the positive trend of considering this a chronic disease, as well as using the term "unpredictable" instead of "aggressive" (or at least as well as the term "aggressive"), because really that's what this monster is ... chronic and unpredictable.

We had a wonderful person with us on this forum who had an awful time with UPSC. She had a very, very grueling journey with all sorts of obstacles in her way ... recurrences, adverse, life-threatening reactions from the meds. etc. By your doctor's prediction, I would guess she would have had a six-month expectancy ... maybe a year.

Our sister was with us for more than five years. I have read of others with a similar rough journey lasting much longer ... and some are still alive to tell the tale. Those include all sorts of Type IIs. 

If your doctor is not willing to fight as hard as your mother is willing to fight, see another doctor. Get a second opinion. It is a matter of life and death. So far, though, it looks like this doctor is.

It's quite possible that your doctor has a lousy bedside manner, but is willing to battle this as hard as humanly possible with your mother. Some doctors are like that. The main thing, though, is that the doctor expends his or her full effort and expertise to help your mother continue this battle, if that is what she wants. She deserves nothing less. If at some point your mother may not want that, that is her decision, too.

Technically ... and this still sounds weird to me, too ... your mother is still a 3c. You do not change stages, even if you have fifty recurrences. She may be a de facto Stage 4, but she is still 3c. So in no way you would be lying if you do not tell her.

CheeseQueen57

Well said

Well said Evolo. My doctor never said anything about life expectancy.  But then again, I didn’t ask. 

NoTimeForCancer

ditto what CQ said about

ditto what CQ said about Evolo's post.  Also, wynterpeak - you NEVER have to apologize to us.  We are here to listen and lend an ear.  You are among friends.

NoTimeForCancer

derMaus said:

Dedicated MMMT Website

I've posted this before but couldn't find it, so here it is again. Maybe I should start a new thread so it's easier to find, as the name of the website doesn't automatically come up first on a Google search? I find this site is very helpful, despite my not having this particular diagnosis. I particularly liked the videos. Hope this is of some use to you. Best wishes, B

http://gcsproject.org

Thank you, B.  I missed this

Thank you, B.  I missed this on your previous post(s).  

wynterpeak

Thank you again everyone. I

Thank you again everyone. I've checked out the sites and gotten my app approved by the MMMT yahoo group as well. 

I suppose the "highly suspicious" thing still really bugs me even though it makes me have that one glimmer of hope that it's not cancer-related. I mean, a tumor is...a tumor, but if it's not 100% mets then I can still hope? right? 

LisaPizza

wynterpeak said:

Thank you again everyone. I

Thank you again everyone. I've checked out the sites and gotten my app approved by the MMMT yahoo group as well. 

I suppose the "highly suspicious" thing still really bugs me even though it makes me have that one glimmer of hope that it's not cancer-related. I mean, a tumor is...a tumor, but if it's not 100% mets then I can still hope? right? 

I can't say how likely it is,

I can't say how likely it is, and I can tell you have a reasonable head on your shoulders. But yes, it's possible. Lots of women have been investigated or followed for suspicious lesions, for example in the lungs, that turn out to be benign.

It's so tough to be stuck in that position, where the choices are get a biopsy and have to interrupt chemo, or forego the biopsy (at least for now) and have to live with the uncertainty. But remember that the bottom line is that she's getting the chemo she needs right now regardless. Thne they'll reassess.

derMaus

You Never Know

Is your doctor certain that a biopsy and chemo are mutually exclusive? I've had two mets twice and both times I had punch - i.e. needle - biopsies. One time it was CT guided, one time was in the surgeon's office; he just numbed me up a took a couple of samples. The later was a 14 cm tumor right on the pelvic bone, which sounds similar to your mother's location. That biopsy came back with a different type of cancer (I'm Lynch positive) so, as it turned out, I wasn't Stage IV with uterine cancer but Stage II with intestinal sarcoma. Without a biopsy I'd never have known the difference. Fortunately my current course of immunotherapy has everything under control. I think it's highly unlikely that your mother's situation is similar to mine. I'm only posting this to say that your never know, until you know. Best wishes, B

janaes

Im so glad to see your taking

Im so glad to see your taking forward steps for yourself. You are in a hard spot not knowing all your answers. My situation isnt the same but do remember not knowinng what type of cancer i had and what treatment i needed.  That was the hardest part.  You sound like you are doing what needs to be done and thata great.  Keep going.

Janae