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Any docs or cancer centers that specialize in rare Uterine cancers e.g. USPC, clear cell, MMMT

Dee5678
Posts: 37
Joined: Feb 2014

Hello everyone. I haven't started treatment yet for Uterine Serous Papillary Carcinoma but am thinking ahead.  I wonder if any doctors or cancer centers have a niche in this? Does anyone know if there are USPC specialists out there?

 

I know the generally accepted advice is to seek a second opinion from an NCI-designated cancer center as those centers are closely aligned with NCI researchers and tend to have more cutting edge treatments. 

 

The standard treatment for UPSC seems to be about the same everywhere, which is what my local trusted (non NCI) cancer center would offer. Would love to get an opinion from a specialist though. Thanks for your help!

Ann55
Posts: 43
Joined: Jun 2013

I'm pretty much hearing the world wide standard of care for upsc is sandwich therapy of course depending on your stage. surgery followed by taxol and carboplatin then external and internal radiation followed by another round of taxol and carboplatin.I'm being treated at UNC but Duke and MD Anderson are doing the same thing. Good luck with your treatment.

Dee5678
Posts: 37
Joined: Feb 2014

Yes, thanks for your reply. The "sandwich" does seem to be the standard treatment of care. On the boards, that seems to be what everyone is reporting. 

 

Are you happy at Chapel Hill? I've heard good things about Lineberger. 

Sandy3185's picture
Sandy3185
Posts: 29
Joined: Oct 2013

I am currently undergoing chemo for UPSC stage 2 grade 3. My doctor at Moffitt Cancer Center in Tampa advised me to have the six chemo treatments before begining radiation. Heexplained that each treatment kills cancer cells, anywhere in your body, and that each treatment lowers the level of cancer cells. If you stop doing the chemo after 3 treatments to begin radiation, it gives any remaining cancer cells in your body a chance to regroup and begin growing and increasing. He feels that if you do all 6 rounds before begining radiation, you have a much better chance of eliminating all remenents of the cancer. I think his explanation makes a lot of sense. I will be having my third chemo session onTuesday. They do blood tests before the chemo including the CA125. When I began chemo, b4 my first treatment my CA125 was 38 and it went down to 19 before my second treatment.

So, I know  that the sandwich treatment is very popular right now, but I think my doctor is right. Now if I can just get through it!  Incidently, I do not know where you are located, but  Moffitt and it's doctors are great. I consistently see MD Anderson in Texas as the top rated cancer center.

I hope this helps and that everything goes well for you,

Sandy

SettledSue
Posts: 20
Joined: May 2012

However, I had a recurrence in the vaginal cuff eight months after chemo ended. It was treated with a laser and then 28 external radiation treatments. My most recent C-T scan 3 months after treatment ended is clear. Now I am waiting for the results of a Pap test. A Pap test was what showed my recurrence before; it wasn't big enough to show up on a C-T scan. I have clear cell endometrial cancer.   Sue

Ro10's picture
Ro10
Posts: 1419
Joined: Jan 2009

I find it interesting that your doctor at Moffitt did not recommend the sandwich treatment for you.  I have a doctor at Moffitt and he recommended the sandwich treatment.  Has the  recommendation changed from 5 years ago?  I would be curious to find out.   I will ask my doctor when I go next time.  

Good luck with your treatment on Tuesday.  You will get through all of it.  Just take it a day at a time.   In peace and caring.

debrajo's picture
debrajo
Posts: 768
Joined: Sep 2011

I ,too, am curious about all the "best treatments"for UPSC.  It was absolutly manditory at MD.Anderson  too use the sandwich method.  The only difference in me was that I had two chemos then   two radiations, then three radiation treatments in one week{Mon.  Wed. and Friday}Then starting the same Friday I started the chemo for 4 more rounds.  I will be waiting to see how you do and hoping it all turns out ok.  It's traumatic when you start, but it gets easier long before it's over.   You will be fine!  BTW  I had treatment in 09  so things may have changed since then!  Best, Debra

Ann55
Posts: 43
Joined: Jun 2013

I am happy at UNC, I see Dr.Kim.The sandwich therapy did not work for me and I will be starting doxil next week,very disappointing but the team tells me it is not the end of the world and they will keep trying until they find what does work for me. I also was very happy with Dr.Varia the radiation oncologist and his nurse Annette.Dr.Kim told me on my first visit that his nurse Ann would be my new best friend and she is always there for me.

Ark1974
Posts: 5
Joined: Apr 2014

First of all I was dx with UPSC 1A, and the treatment plan offered by my doctor at Carti, was to observe,  is there anyone else that has had this option given to them?

I am getting a second opinion on Friday this week.  Very nervous about this type of cancer forsure.

 

thanks, Debi

pphill01
Posts: 1
Joined: May 2014

Hello Debi, my name is Pam. I was diagnosed with Stage 1A, clear cell. I had a malignant tumor removed from my uterus in March. Thankfully it was removed contained. There is no cancer in my lmyph nodes or any other organs and they performed a robotic hysterectomy.  The first staging was a 1B, but after the tumor review board, it wsa staged at a less size at 1A, so I do feel blessed for that. At first they were going to do what is called a sandwich treatment, chemo/radiation/chemo, but after the new stage of 1A, they recommended 6 treatments of chemo, Taxol and carb...something, 1 treatment every three weeks for 6 hours. I had my first treatment on May 12, and Im scheduled for my 2nd treatment on June 2nd. The Dr told me had this not been the "aggressive clear cell" type, I would not have needed chemo. So I went ahead. I handled the 1st treatment well. But I did feel numbness in my feet, (I do have some neroupathy anyway in my feet) and I felt stinging and jabbing pains in my ankles, across my forehead, my right arm and neck and my joints were very stiff and some pain. I was not nauseated, but they had put some anti nauseau meds in my arm as well. I am feeling really great now, as I was before the chemo, and I am having doubts that I really need to go on with this chemo, since the cells are at such a low stage. The side affects that I read about seem to be so terrible, plus I have such faith that the Lord has interevened and these cancer cells are dead! My family, however, wants me to go on with the chemo treatments, because of it being the rare clear cell type, even though the chemo can cause so many other things. I wish there was a test that could tell me if these cells are dead and gone? If you know of any test, please let me know! I thank you and pray you receive the help and attention that you need to get well! Thank you for any info you may have and please let me know how you are doing as well! Pam

 

NoTimeForCancer
Posts: 461
Joined: Mar 2013

I had my faith and friends, and my new friend chemo!!  I had UPSC Stage 1A and the full monty of treatment (chemo/radiation/chemo).  These cancer cells are buggers and they like to hide.  Please don't think they won't come back if given the chance.  The side effects are heck, I hated it all, especially having to worry about constipation after major abdominal surgery (!!!) so please consider continuing.  Of course your family doesn't have to go through everything you do but they want you around and you were blessed - blessed that this was caught so early!  That is the most amazing point of this. Kill any of those cells hiding and chemo is the best arsenal in that war.

pinky104
Posts: 69
Joined: Feb 2013

I had 6 rounds of carboplatin and taxol, nothing else, for stage IVb UPSC.  I haven't had a reoccurrence where so many people on this site with other treatments have, so I tend to agree with your doctor.  I had surgery in May, 2010 and finished my chemo in Sept., 2010. 

sunflash's picture
sunflash
Posts: 153
Joined: Aug 2011

Very interesting to hear what your doctor said, Sandy.

There's so much about UPSC that is unknown. When my doctor, who used to work at MDAnderson and is now in private practice at Texas Women's in the Houston Medical Center discovered my UPSC (stage 1a), she recommended 6 sessions of Taxol/Carboplatin spaced 3 weeks apart. No radiation was recommended. I was also treated by her for vaginal cancer 7 years ago and received both chemo and radiation for that. I assumed she didn't recommend radiation because I'd had prior radiation for my vaginal cancer, and she told me no, she wouldn't have recommended it even if she could have.

I went to MDAnderson for a second opinion, and the doctors who saw me there told me they agreed with what my doctor had said, but they recommended spacing my chemo to 4 weeks instead of 3. They explained that since I'd had prior chemo they didn't think my blood counts could handle the 3 week interval and my chemo treatments would require having a shot of neulasta or would have to be postponed anyway. 

When I reported this to my doctor, she disagreed, saying, why would I want to space out your chemo and give cancer a chance to regroup, morph, and become chemo resistant? I still recommend you having chemo every 3 weeks and if your blood can't handle it, will make adjustments THEN!

I agreed with her and my chemo was delivered every 3 weeks with no problem.

My surgery (hysterectomy) was June of 2011. That's when the UPSC was discovered in a small polyp embedded between the inner and outer layers of my uterine wall.  My chemo was finished in November of 2011. So far no indication of a recurrence at all.

I've been seen every 3 months and just moved to a 4 month followup schedule.

Very interesting to me to see the different protocols followed by doctors.

BTW, my CA125 was 4 following my surgery and is now 7. It probably is not a good indicator for me, but my doctor watches it anyway.

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

Now that I'm a "first recurrence" MMMT cancer patient I'd like to chime in now.  When I was first diagnosed with stage 3C MMMT Jan. '09 it was a definte out of my docs mouth to start with front-line chemo -- carboplatin/taxol and use sandwish setup with 33 rounds pelvic radiation in middle.  I had a good 4 years NED.

After recurrence last August  the doc did the same setup with assay as completed in Jan '09.  This time it showed carboplation/doxil.  Not that my cells were different, but now they've had doxil out on many clinical trials and additional time for testing, it's a better drug for me now.  Not saying this will be the new standard "front line" setup, but know time marches on and so does resarch and today might show different treatment protocols due to newer research, etc.

Also, my doc after recurrence told me more research on success with doing the chemo and radiation at same time.  This week a chemo and next week radiation or both in same week.  I know there's a name for it, but told me has been very promising with many of his patients with MMMT.  This wasn't an option for me to even do radiation, as the location for the node which was inflammed was close to my jugular vein in supraclavicular area (neck).  This might as well be another option as new research and/or clinical trials showing different protocols vs. just 5 years ago.  

Just my take after seeing it from both sides...

Best to all

Jan

ConnieBH
Posts: 2
Joined: Oct 2013

Hi Jan,

I've seen some of your messages, first of all, I am sorry for your recurrence.  You are in our prayers.  I have been researching this MMMT situation because my dear mother was diagnosed with it back in September 2013, they originally said uterine MMMT stage III but recently said stage IV due to CT scan showing more spread.  So, the bloodwork is pretty good, she's having her 5th chemo tomorrow (she lives in Vancouver, Canada and we live in California) - tumor markers have gone down.  They changed her therapy from the sandwich one of 3 chemos, 3 radiations and 3 chemos to just 6-7 chemos since the CT scan showed spread and no longer localized.  This was devastating but today her Dr. said they are optimistic since those CA125 numbers keep going down.  They went from 230 to 90 to 70 recently.  She also eats very healthy like you, she nas a Naturopath that gave her a ton of supplements to protect all her organs from the chemo damage, she also goes to an integrative Dr. in Canada who saved another friend's life after battling several cancers throughout her life so far, and she takes some herbs from an herbalist in Mexico somewhere that people say he cures cancers.  I now there are a lot of scams out there but he was actually recommended through personal friends that have seen his work.  If this helps her or shows cure I can send everyone the info, but don't want to get anyone's hopes up if it's some scam.  It's hard to get, he makes herbal teas and ships them liquid, so he can't ship international.  Another thing, she wants to do the Gerson Therapy, have you heard about the Gerson Institute?  They are based in California but the clinic is in Tijuana, Mexico.  They have cured cancers through a massive, very strict juicing and diet and supplement program, but they won't accept a patient that has done extensive chemo, they have a limit.

Just sharing info that could help someone.  Good luck on your new treatments, hang in there, I am glad to see some survivors here!

My mom is 64 and was always healthy until this unexpected bleeding and diagnosis.  She always uterine fibroids and though my Dr. wanted her to have a hysterectomy 15 years ago, she refused, another Dr. told her not to worry, that fibroids don't cause problems and she would have scar tissue problems, so she didn't do it, and now she's kicking herself, though we motivate her not to focus on what's in the past.

Would love to hear more about your nutrition and story.  Thanks for your time!

Connie

Goldheart
Posts: 36
Joined: Sep 2013

Hi Connie,

we live in Canada too - in Toronot and I just want to know which integrative Dr does your mom see?

My mom was also booked to have a hysterectomy 20 years ago because of irregular bleeding but another doctor talked her out of it. Now she is kicking herself. She was diognised stage 3C UPSC in June last year. They refused to do the surgery on her in Canada because they thought it won't make any difference. We went to US for surgery. I learnt Drs do as little as possible in Canada because they don't have any money. And sadly there is no private health system. In toronto, they don't beleive in Sandwich treatment at all. Because there isn't enough evidence to prove it works. 

My mom also has a tumor in her breast, and the doctors here told us the same thing. No surgery, just take Hormon drugs. We are going back to US for surgery next month. Basicly, the doctor here think it's not worh fighting to live longer. So tragic and depressing ...

Best wishes to your mom.

 

Sandy3185's picture
Sandy3185
Posts: 29
Joined: Oct 2013

It is really a disgrace that your Mom has received such a poor response. I am glad she was able to get treatment here. I will say, however, that my Dr at Moffitt Cancer Center in Tamp Fl does not believe in the sandwich treatment. He feels the chemo has a much better chance of destroying all the cancer when you do the complete course of treatment without interruption. That way any remaining cancer cells have no time to regroup and start growing.

i wish your Mom well and I hope she is able to get the treatment she needs. Don't give up!  Sandy

Dee5678
Posts: 37
Joined: Feb 2014

Thanks so much, everyone, for your replies. There's relatively few of us and I am always interested in how - and what - everyone is doing and what the new treatments are on the horizon. 

survivingsu's picture
survivingsu
Posts: 33
Joined: Apr 2013

Hi,

I'm not sure how my cancer fits in, but I had undifferentiated small cell carcinoma uterine cancer.  I was told by my doctors that it was very rare.  That was five years ago this July.  No more occurence knock-on-wood.  I had excellent treatment at the University of Washington Medical Center and the Seattle Cancer Care Alliance (they partnered together).  They knew what they were doing.  They kept up with the latest technology and treatment recommendations.  They have skilled surgeons and expert radiologists.  I had chemo and external radiation simultaneously, then internal radiation, then surgery, then follow-up chemo.  I was pleased with my doctors, nurses, technicians and support staff.  They were all confident and believed from the get-go that I could get through this.  When things came up, which is typical, like my blood counts tanking, they knew what to do.  I feel very lucky to live nearby.  I would recommend the UW/Seattle Cancer Care Alliance to anyone with a rare cancer or a common cancer.

All my best to you,

Susan

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