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MMMT Stage 3a

BeckyC
Posts: 11
Joined: Oct 2012

My mother was diagnosed with uterine carsinosarcoma - MMMT - we just got the pathology back from the surgery and they said it is stage 3a. The surgeon didn't take any lymph nodes during surgery - she thought it was stage 1c after the surgery. When she talked to us she didn't really explain that the new staging meant that it had spread beyond the utereus. It was found on the surface of both ovaries and the fallopian tube. I wonder now why she didn't take any lymph nodes during surgery. I wonder if this was a mistake. The initial cat scan didn't show any enlarged lymph nodes but now i am really afraid. My mother is taking part in a clinical trial - either will get carbo/taxol or ifosamide/taxol, She had another cat scan on Wed and Idon't think I will be able to sleep until I hear the results. So afraid a mistake was made at surgery by not taking any lymph nodes. Any thoughts?

debrajo's picture
debrajo
Posts: 786
Joined: Sep 2011

I don't have this kind of cancer, but they didn't take any nodes from me either(which made me very mad!)because they said they all "looked good" and the scan didn't detect any involvement. I am sure the other ladies with this kind of cancer will be here soon to answer questions. Please, try to relax, there was probably a good reason for not taking the nodes, and they can always go back in to get them or radiate them. We are all here after several procedures and trials and errors. Get some rest and take this one little step at a time. I am 2 1/2 years out of chemo, or NED, so maybe her nodes "looked good" too! Best, debrajo

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Becky - I have this kind of cancer and they did not take any lymph nodes. My CAT scans did not show any enlarged lymph nodes either but in my case, they thought it was a different kind of cancer before surgery that apparently doesn't spread to the lymph nodes. After the pathology report came back and they saw it was MMMT, my surgeon debated going back in and taking a sampling of lymph nodes, but after consulting with colleagues decided against it as the treatment is the same either way and lymph node removal can result in lymphadema which I understand can be pretty miserable.

Carbo/Taxol or Ifosfamide/Taxol is the standard treatment for this kind of cancer (I received Ifos/Taxol) which should take care of any pesky cancer cells that could be in lymph nodes. Is your mother getting radiation? I received 25 rounds of external and 3 rounds of internal which is also pretty common.

I wouldn't worry about it. We have dozens of pelvic lymph nodes and even if they had taken a random sampling, it doesn't mean that they would have gotten the ones with the cancer cells in them. There has also been some talk that taking lymph nodes isn't beneficial and doctors aren't doing it as much anymore, especially if it doesn't change how the cancer is treated.

Hope this helps
Take care,
Cindy

BeckyC
Posts: 11
Joined: Oct 2012

That helps so much! Thank you cindy! the oncologist isn't sure about the radiation right now - she said she might do some after the chemotherapy. What stage was your cancer? How did you handle the chemo? The dr said the side effects might be worse with the ifos/taxol regime. I think the anticipation of the chemo might be worse than the actual treatment - mom gets her port on thursday and then chemo starts next wed I think. Thanks so much for your response!!

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

Sorry to read about your mom and I as well was diagnosed with uterine MMMMT, stage 3C. Mine was found in 1 lymph node in pelvic area. Completed July '09 chemo (carbo/taxol) and 33 sessions of radiation, external pelvic.

Can tell you our type of cancer tends to spread in lymph nodes and lungs, plus other prime areas. The reasoning for chemo, kills the cells the docs didn't see during my total hysterectomy and removal of 24 lymph nodes. Then the pelvic radiation zaps where the cancer was found -- uterus and pelvic lymph node.

I must say, I followed the very qualified oncologist/OB which suggested these types of treatments and reasoning for them. So..if he were to tell me NO LYMPH NODE REMOVAL, etc, I'd most likely follow his lead.

If you do not feel comfortable with this docs treatment plan, might I suggest another referral to new doc. As well, make sure the doc is OB-oncologist.

Chemo was told to me, cumulative. As they add on another round of chemo, the symptoms get a bit worse...now this is in most cases, as everyone is different. Just keep lots of fluids in her, plus some good protein to build up her system and keep her strong. Lastly, lots of rest...really difficult for the body to fight cancer and add on the toxic drugs.

Port is really easy, just get used to something under her skin. Might be sensitive to the touch, but very useful during chemo. Avoid being a "pin cushion" while RN's trying to find veins....yuck!

Best to you and your mom,
Jan

BeckyC
Posts: 11
Joined: Oct 2012

Thank you so much for your responses! The cat scan from last week ( her first in 6 weeks) came back clean and we are very thankful for that. She is in a clinical trial - 420 women throughout the US - all with MMMMT - they are studying which chemo treatment is most effective - carbo/taxol or ifosamide/taxol - my mom got the carbo/taxol. Hopefully this trial will help treat this awful rare cancer. They are seeing more and more of it with women living longer and more have their utereus. Her first chemo is next Monday - I will spend the night with her. Her dr said she would give us like 4 scripts for anti nausea meds and to get them all filled just in case. She is very brave and strong - I am praying always for all of you!
Becky

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

Everything sounds like you've got a great handle on the protocol. Did you say docs will do radiation? I love to read about clinical trials, especially for our aggressive cancer type.

Yes people are living a lot longer on most any type of cancer, especially at earlier stages. I've been NED since completion of treatments in July '09...knock on wood (my head..lol). As well in another online group just for MMMT and finding a good number of our members with stage 3 are living well past 5 yr mark. Do NOT read the statistics and research on MMMT, nothing is updated with the latest and greatest.

Plaque in my oncologist office --

~~YOU ARE A STATISTIC OF ONE~~

Jan

Lovekitties's picture
Lovekitties
Posts: 2963
Joined: Jan 2010

While I am new to this board, I do have personal experience with cancer.

I have heard that surgeons are taking fewer lymph nodes during surgery if there is no outward indication they may be affected ( that is if they look ok visually and also on scans). If lymph nodes are taken and appear clear, it may be that there are others still there which are not. Without an indicator, there is no way to know.

Also in the past when very many lymph nodes were taken, the patient often suffered from fluid build-up in the lower extremeties because the nodes were not there to move it up and out of the body normally.

Careful follow-up is always a must.

Marie who loves kitties

debrajo's picture
debrajo
Posts: 786
Joined: Sep 2011

Learn something new every day! Your explanation of the dr.s reasoning for not taking lymph nodes solved a 2 1/2 year mystery for me! My dr. and I discussed the radical hysterectomy and decided to do lymph node sampling/removable. After the surgery I found out she didn't take any because "they all looked really good"(???)! I was totally ticked off to say the least! Now I somewhat understand. Thanks for the clear explanation! Best. Debrajo

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