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MMMT with bone mets, anyone with similar case?

I believe
Posts: 37
Joined: Oct 2012

Hi All,

My mom was diagnosed with MMMT stage I in Sep 2012 at the age of 72, after the hysterectomy she had 4 rounds of Chemo (Carboplatine/Endoxan). Two months ago and after she hit her head a small mass started growing and the recent MRI results mentioned that it is most probably bone mets in the skull. The tumor is growing fast day after day (the size of the tumor is now almost the size of a tennis ball) . In additon to the headacke, the pain worse at night, she feels numbness, tiredness and extreme thirst which I read that all are symptoms of bone mets.

She will have biopsy next tuesday but couldnt wait and called the Dr and told him about the serious symptoms she's having and asked him if we can start some drugs from now and he suggested to initiate the drugs prednisone 50 mg and nexium 40 mg one tablet of each per day.

I wanted to check if anyone on the board had the same situation and what are the next steps and how to deal with the new issue of bone mets.

Thanks in advance for any advice

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Did you get any feedback on your mom's issues?  I don't know anyone with uterine having bone mets and what they did.  A few gals whom are breast cancer survivors have had bone mets, and docs have them on "special" type drugs to keep the bones strong.  More susceptible to bone fractures as bones simply have holes in them and density is very low.

How did the biopsy go yesterday?  That should be the definining answer on the mass.  

I'll pray for you and your mom and plse let us know what they find.

 

Hugs,

Jan 

I believe
Posts: 37
Joined: Oct 2012

Hi Jan,

Thank you for the above note. Yesterday, mom had the biopsy operation and now she's back home. The neurosurgeont informed us that it is cancer and he has to wait for the biopsy results which takes from 10 to 15 days to propose the action plan. He said there are 2 scenarios

1-  if the type of cancer is treatable, he would propose a surgery to remove the tumor and to be followed by radiation to kill the remaining cancer cells

2- if the type of cancer is non treatable by operation, he would propose not to do any operation or radiation

In the mean time, he asked for MRA which is a technique to image blood vessels of the brain and asked for certain blood tests. I believe he asked for MRA because the tumor is putting pressure on the brain which is causing numebness and once a day for 10 minutes can't move her right hand fingers

The 3 doctors ( neuro, Gyn/Onc, Hemat )handling mom's case said it is an extremely rare case to have a uterus cancer with bone mets since it is more common in breast cancer, lung cancer. In addition, they are really surprised that the last PET scan (2 months ago) is NED and now a recurrence in the skull and told us that they will give special attention to this case since it is rare.

The neurosurgeont said that during the biopsy operation there was no extensive bleeding from the tumor and its a good sign.

The good thing is that my mom's is still mentally and physically strong  and we are hoping that we can do an operation to remove this tumor.

I am preparing a list of questions to the Drs once we receive the biopsy and MRA results.

Hope you are doing well with the chemo treatment and always keeping you in my prayers and I am confident you will beat cancer again.

Will keep you updated..

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Seems like your mom has a lot of unknowns and yes never heard of someone with uterine having it go to the skull. Could it be an entirely new cancer?  Be optimistic as they're somewhat clueless as to why and nothing showing up on the MRI.  

Thanks for asking about me, yes I'm doing quite well. Have a week and 1/2 before my next infusion, so enjoying my good energy and positive mood.  I've come to the conclustion, this is once again out of my hands, but remember we all must enjoy the time we have NOW.  This weekend is the retreat for the new naturopathic oncologist, which I feel will totally change my life.  If nothing else, have a great time, meet some wonderful cancer patients/survivors and learn a lot about cancer and how natruopathic plays an important role in this disease.  Surely can't be all about western treastments, as many of them done alone just don't work.  

Keep us updated on your mom...and best to you both!

Jan

 

 

 

I believe
Posts: 37
Joined: Oct 2012

Hi Jan,

As an update, today we recieved the biopsy results of the tumor in the skull and its MMMT. The doctor said that worldwide there are only 100 patients with similar case (MMMT with bone mets, as if the MMMT which is already a rare cancer is not enough and now we have to deal with rare bone mets!). He will do an operation on the 28th of November to remove as much as he can of the tumor and to be followed by radiation since it is not possible to do radiation without operation due to the big size of the tumor.

Now, I have to inform my mom about the results and hope it will not push back on the operation. The only positive point is that this is the only place with cancer and it didn't show up in any other place and hoping it will be the final battle.

The Doctor said there are no guarantee for this agressive type of cancer and it might show up again after a short period of operation and it might not....

Wishing you good luck with your next infusion in the coming days and keeping you in my prayers and God bless you

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

So sorry to hear about your Mom's cancer spreading to her skull.  I pray that the surgery goes well, and the radiation takes care of the rest of the tumor.   I will keep you and your Mom in my prayers.  I know the road ahead will not be easy for any of you.  In peace and caring.

RoseyR
Posts: 462
Joined: Feb 2011

 

Dear "I Believe,"

 

As a fellow uterine MMMT survivor, I am so sorry to hear about this latest challenge.  Yes, mets to the bone are rare with uterine cancer, but they DO occur; I read of a case recently of MMMT spreading to the leg bone. More often it goes to an organ (lung, liver, pelvic region, even the brain), but apparetlly it CAN spread to the bone.  

 

Hope your mother is seeing either an integrative or naturopathic doctor in addition to her oncologist--for often, the former can minimize complications and side-effects of treatment.

You might look for such doctors in your geographic region.

 

Love and Best

Rosey 

Tresia23's picture
Tresia23
Posts: 71
Joined: Dec 2010

Hi Jan,

I was upset when I read your post about needing further treatments and I could not respond because I did not know what to say. You are such a great support to everyone on this discussion board. I mean everyone. It is no mean feat to keep on engaging with others who are going through difficult times. You are an inspiration. Kindest wishes to you

I believe
Posts: 37
Joined: Oct 2012

Thanks RO10 and Rosey for your kind words.

As an update, my mom had the skull surgery and the doctor removed 97% of the tumor. Today we recieved the biopsy resutlts and it is mentioned that MMMT invasion of the skull and part of the brain.

The radiation Doctor proposed 20 session of radiation and told her that she will loose her hair. In addition, to the radiation she will have to take monthly infusion of Zomita which is a drug to slow down the spread of cancer in the bones.

The Dr informed us that if the cancer in the brain is active, then he will propose Chemo again.

Mom is really demotivated now after two huge surgeries in one year (total hysterectomy and Surgery in Skull), 4 rounds of Chemo and now 20 rounds of radiation. Its too much.....

Mom asked me if I think the radiation will help and I really don't know what to answer because I don't want her to suffer for nothing and after a short period the cancer will come back again.....and what is really frustrating is that after only 2 weeks of this huge surgery in the skull, a small mass is appearing now in the skull and asked the Dr about it and he said it is suspicious...

I really feel that life is worthless and not fair....sorry for being negative but its a fact

 

 

 

I believe
Posts: 37
Joined: Oct 2012

Mom passed away yesterday after 1 year and a half of being diagnosed with cancer. I will miss her a lot because she was my freind, my support, my motivation, and I am who I am because of her.....but at the same time I have faith that she's in a better place now and God is taking care of her.

She was a stronger fighter and insisted on fighting till the end and wanted to keep on doing the chemo sessions although she was half paralysed after the brain mets...

I love you mom and you won the battle and your now with God where there is no pain, no suffering and no cancer...

Finally, I would like to thank you Jan, Connie, Rosy, Ro and all the ladies on this board for all your support during this tough journey and will keep you in my prayers..

Thanks

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm deepely upset to read this news!  Life is so difficult as it is, then add in some disease with treatments...tough!  She did give it a good tough fight and know she's finally at peace and in no pain.  

Condolences to you and your family~

Jan 

ConnieSW's picture
ConnieSW
Posts: 537
Joined: Jun 2012

I am so very sorry.  May your memories bring you comfort.  Take care

Connie

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

My deepest sympathy on the loss of your Mom.  I am happy you are taking comfort Iin knowing your Mom is no longer suffering and ithat God is taking care of her.  MAy the memories of your Mom become treasures for you.  In peace and caring.

Dee5678
Posts: 37
Joined: Feb 2014

I'm so sorry to hear this. What a tough time she had.  She was really fortunate to have you in her corner. My deepest sympathies. 

Kaleena's picture
Kaleena
Posts: 997
Joined: Nov 2009

So sorry for your loss.  I will keep you and your family in my prayers.

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