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MMMT complications (met @ bone)

wynterpeak
Posts: 12
Joined: Sep 2018

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
Posts: 12
Joined: Sep 2018

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's picture
Armywife
Posts: 315
Joined: Feb 2018

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's picture
Jairoldi
Posts: 214
Joined: May 2017

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
Posts: 772
Joined: May 2016

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
Posts: 772
Joined: May 2016

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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
Posts: 871
Joined: Jun 2016

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.

wynterpeak
Posts: 12
Joined: Sep 2018

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".   

 

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

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
Posts: 536
Joined: Oct 2009

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's picture
derMaus
Posts: 561
Joined: Nov 2016

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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

wynterpeak
Posts: 12
Joined: Sep 2018

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
Posts: 293
Joined: Dec 2017

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's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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.

wynterpeak
Posts: 12
Joined: Sep 2018

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's picture
LisaPizza
Posts: 220
Joined: Feb 2018

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's picture
derMaus
Posts: 561
Joined: Nov 2016

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
Posts: 772
Joined: May 2016

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

8Cloud's picture
8Cloud
Posts: 4
Joined: Sep 2018

Hello everyone. I want to start by saying thank goodness for all of you because as I struggle to wrap my mind around my mom’s diagnosis  I am comforted and encouraged by your journies. You all are so brave and selfless to share your stories in an effort to help others. 

My mom was diagnosed with MMMT in July and immediately started chemo (taxol) the first two rounds went relatively well and then she had a bad allergic reaction to the third so the started her on Carbo which did nothing but make her sick. Now she is dealing with ascites (fluid in the belly) which was drained twice but since it keeps accumulatin, she had a catheter So that we can drain daily at home. We also have to do at-home hydration because she can’t keep food down. She has lost so much weight from not being able to eat. 

Today she had an appointment where the doctor scheduled her for a new chemo treatment starting tomorrow. I really hope this one takes. I don’t want to get discouraged even though I’m so scared. My mom is 59 and this time last year she was an energetic, vibrant lady full of life. She said she’s going to fight no matter what. I hope she keeps that fighting spirit. I’m rooting for you all. Keep fighting the good fight!

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

Your mom is our sister and we have welcomed her in to our fold and will be praying for her and you. Try to take one day at a time. We are all with you in spirit. 

8Cloud's picture
8Cloud
Posts: 4
Joined: Sep 2018

We all know how vital support is. I need all I can get. i so appreciate your prayers and I continue to pray for all of you.

janaes
Posts: 772
Joined: May 2016

8cloud welcome to our group. Im sorry you have to be here but its a great place for sopport. Thanks for sharing your journey with us. I too hope your moms next chemo works. I was diagnosed with MMMT uterine cancer stage 2 grade 3 may of 2016. Sounds like youand your mom are doing what needs to be done. 

 

8Cloud's picture
8Cloud
Posts: 4
Joined: Sep 2018

i Hope today brings you closer to healing. It just sucks that you have to go through this. What’s crazy is that I didn’t know there were grades to this Until I joined this group. No one ever told us the stage or grade of my mom’s MMMT. I feel like I really don’t want to know. What I do know is that according to the doctor the disease is such that he doesnt think it would be amenable to surgery. So with surgery off the table, im really hoping this chemo does what it needs to. she is going through so much and I feel helpless. 

Northwoodsgirl
Posts: 536
Joined: Oct 2009

8Cloud, You are a blessing in your Mother’s life no matter what. She needs your optimism and encouragement in small and quite ways as she fights her cancer. 

Please know I am keeping you and your Mother in my prayers dear one....

You need to remember to take care of yourself in order to help and care for your Mom. It is so hard to be the daughter when you also have to be the advocate and caretaker. 

I also took care of my Mom when she had uterine cancer which she did not survive. Please remember there is always hope despite the survival predictions. 

Peace and grace, 

Lori

8Cloud's picture
8Cloud
Posts: 4
Joined: Sep 2018

Im so very sorry for your loss. You’re amazing to reach out to others as you grieve. I’m sitting in my mom’s hospital room watching her struggle and my heart is breaking apart. I don’t want to eat because she can’t eat. My brain knows I have to take care of myself but my Emotions are focused on her. I have no appetite. My stomach is in knots. This has become one big waiting game. This chemo feels like our Hail Mary half-court shot. It truly is in God’s hands. 

Thank you so much for your Prayers and kind words. It is getting me through this difficult night 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Hi 8Cloud,

I'm a Grade 3 (undifferentiated) and Stage IIIC myself. I've had a lot of treatments - and an entirely new type of cancer - since my diagnosis in November 2016 but I'm here, on immunotherapy, and feeling pretty good. Your mother is down but far from out, so hang in there. You are in my prayers. 

pato58's picture
pato58
Posts: 102
Joined: Jun 2018

You really are a loving and compassionate daughter.
Your mom and you are in my thoughts and prayers.
Take care!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

8Cloud, my heart breaks for you.  Your mother certainly raised a loving daughter.  Don't hesitate to be her advocate when she can't be one for herself.  

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i hope things are better for your mom. Please tell her she has a lot of women she doesn't know rooting for her. 

Shawnhrsn
Posts: 6
Joined: Oct 2018

You are all so wonderful for taking the time to post and encourage many. My mom received the MMMT diagnosis Monday. We made an appointment at the cancer treatment center in Zion, Il.

janaes
Posts: 772
Joined: May 2016

Shawnhrsn,  welcome to our forum. As we say im sorry you have to be here but am glad you found support. This is a great place to find that.  Two and a half years a go i found this place and found much love and support. I was diagnosed with MMMt uterine cancer stage 2 grade 3. I have been done with treatments in november it will be two years. I wish your mom the best as you guys go forward.

Shawnhrsn
Posts: 6
Joined: Oct 2018

Thank you Janaes for the well-wishes. It means alot

Northwoodsgirl
Posts: 536
Joined: Oct 2009

I am sorry you are having to deal with all that is to come with your Mom’s diagnosis. Just having an appointment at a cancer center starts the journey to fighting this awful disease. 

There are so many daughters of mothers who have some type of uterine cancer... It reminds us all that cancer strikes families and not just the individual in so many common ways. 

As I reminded 8Cloud, please try to take care of yourself so you can help your Mom. You are under more stress than you may realize. Remind yourself that you are strong and resilient and try to stay focus on dealing with one day at a time. 

Lori 

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Hi wynterpeak,

I was also diagnosed with uterine MMMT (also called carcinosarcoma). I was fortunate to be diagnosed with an early stage although still had to deal with a recurrence which was treated. I am now NED and it's been 3 years since my initial diagnosis. I want to let you know about the MMMT Facebook group. It is quite large (now at about 700 members). It is open to family members as well as MMMT patients. The group has been maintaining statistics over the time the group has been in existence and there are members, including those with stage 3 or 4, who are long term survivors (10 years or more). Because of the size of the group it is a good place to go to learn about different treatments and followup care since there are women who have experience with a wide range of treatments. Hoping for the best for you and your mother. 

Shawnhrsn
Posts: 6
Joined: Oct 2018

Thank you for telling us about the Facebook group! Survivors of 10 years or more! Wow! My mom had a hysterectomy yesterday. It was contained in the uterus. We are awaiting the pathology reports to see if what type of treatment is suggested.

wynterpeak
Posts: 12
Joined: Sep 2018

hey everyone. 

today i received confirmation (well, basically that looking at MRI scans) that it's bone mets, in a spot on the spine. the doctor has restated a year's time left for her and has mentioned giving up on chemo and making the most of her time left because in her words "stage 4 cancer is incurable".  i don't know what to think 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Wynterpeak, I am sorry to hear this news.  Has your mother been told and what is it she wants to do?  

wynterpeak
Posts: 12
Joined: Sep 2018

heya, 

 

my mother took the news extremely badly (we just got it this morning). she has been crying a lot and i genuinely don't think she's capable of making any plans for the near future. 

another thing we were told is that right now, at least, she is responding very well to the chemo treatments so far. so having the doctor talk about giving up just because it's "no cure in sight" just feels wrong. if it will prolong her life, i am going to discuss continuation of treatment

LisaPizza's picture
LisaPizza
Posts: 220
Joined: Feb 2018

No one knows how she will respond. Statistics are averages, and many people far exceed the averages. Some people persist with the chemo, suffer in the time they have left, and don't even respond or get benefit. Others may respond and do unexpectedly well. No one knows what will happen, and it's a horrible choice to have to make with poor information. I'm so sorry. You might consider a second opinion, as some doctors are definitely more aggressive than others ... but being more aggressive may or may not be the right thing. She definitely needs psychological support right now, regardless of what she does. Her doctor shouldn't just leave her to cope on her own.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i second your advice. 

wynterpeak
Posts: 12
Joined: Sep 2018

i brought up the various websites to our doctor but he dismissed them as 'just things on the internet' and told me to be realistic because if people typically only live about 1 year after diagnosis ( she was stage 3c before, and with this bone mets he changed it to 4 ie. 100% terminal, in his words ) then we would be betting on miracles to get her to live longer. 

 

yeah, i...we are not really receiving much support from our doctors. 

 

EDIT: he is aware that old data is old, but he is of the opinion that if this old data wasn't updated, then they're still the truth and i should come to terms with it. 

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

He sounds so cold and uncaring. 

wynterpeak
Posts: 12
Joined: Sep 2018

unfortunately i think it's because she is very utilitarian. my mother is considered 'a lost cause' so she wanted to divert her attention to other 'curable' cancer patients. 

 

this hurt me a lot to type but it's the only reason i can think of to explain the callousness.. 

LisaPizza's picture
LisaPizza
Posts: 220
Joined: Feb 2018

The doctor may feel that way,  but it makes me so angry. Someone like that should not be a cancer doctor. We need our doctors to be honest with us, but no one should ever be given up on. Your mother is lucky to have you on her side.

 

I could be wrong, but I don't think it's the worst thing if she's in a little denial right now. It's HARD, and it takes time to cope and find your place. And one thing I know from having gone through it (stage 3), is that what you let on to others, and what you know and feel every night when you're trying to sleep, are two very different things. You're trying to spare others, you're trying to convince yourself, or just trying to make it through the next 5 minutes without tears and fear. Your mother probably understands better than you think. Just be there for her, as you already are. I know that it means everything to her.

wynterpeak
Posts: 12
Joined: Sep 2018

my mother definitely wants to proceed with chemo, but i fear that she's entered denial stage (about her being stage 4 and this mmmt being...well, terminal) bc she keeps talking about getting surgery to remove the afflicted bone and i don't think she understands that it's not that simple and won't be..i will discreetly be making calls to other doctors, and while i eventually have to talk to her, right now her determination to 'get treated' is what i want, so i won't cause her any despair right now, i don't know if that's a correct call..?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

winter, I am so sorry.  My heart breaks for you and your mother.  If she feels good and wants to continue than she should continue.  It should be her choice - not the doctors.  You have been, and need to continue to be, an advocate for your mother.  Your mother is lucky to have you.  

wynterpeak
Posts: 12
Joined: Sep 2018

my mother is adamant about continuing the chemo because the doctor says that she is currently responding well to treatment and she feels fine right now. i fear that she's entering a state of denial because she keeps talking about 'getting rid of the cancer in the bone' and i don't have the heart to shake her from this beacon of hope she's set up. unfortunately i don't think our doctor is still interested in her well-being anymore. 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Is there a reason you can't get another doctor?

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