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Thought the pathology report would clear things up, but ...

evolo58
Posts: 293
Joined: Dec 2017

Now I'm more confused.

Originally, I was textbook adenocarcinoma. Then a CT scan implied that I had pertioneal and omental spread. I was diagonsed UPSC, Stage IVB. From Stage 1 adenocarcinoma to Stage IVB UPSC in two weeks is pretty darn drastic!

The CT radiologist's report is ... odd. Even my family doctor said that, so it's definitely not just my impression. He told my doctor, for instance, that he was not concerned about one finding, but put it on the report as possible metastatsis. He called both my fibroids and the pertionneal/ormental findings soft nodular tissue and implied that both were cancerous. Sorry, but fibroids usually aren't. He mentions a nodule on my liver, but was unclear whether he thought it was probably cancer, and did not include it in his impressions. (Fatty liver can also cause enlarged nodules.) To say that neither my family doctor or I enitrely trust this report is a understatement.

I had had a very messy, involved myomectomy that left scarring all over my peritoeum and omentum. Before the pathology, my surgeon felt the finding might have been due to that ... until she got the pathology report. So I figured that the pathology report would reveal all.

Well, now I finally got the pathology report as well. Half is consistent with adenocarcarcinoma ... CK7+ Ck20-, heavy presence of B-catenin. The other half stated that I "tested positive" for p53 and p16 ... more like UPSC. However, it didn't say much more. How much of a percentage? Trace? Moderate? Heavy? That makes a difference! My Ki-67 result was 50%, so that is of concern to me. I know the most liberal percentage for the best outcome is usually no more than 30%. The pathologist also didn't test other genes or factors that could give us a better picture, such as E-cadherin. 

OK, I thought ... possibly I'm mixed. But wouldn't the pathology report say that? MMMT is a different entity, and it would be pretty darn clear if it was, I would think! From reading the posts here, most of you ladies with MMMT knew pretty much at the get-go that you had this.

Good thing I'm getting a second opinion tomorrow. Maybe SOMEHOW someone can clear this up!

saltycandy13
Posts: 167
Joined: Dec 2017

I'm sorry this is all so confusing.  I know a lot of these tests are so inaccurate.  Sometimes I wonder what they are REALLY looking at.  I know a doctor that calls ultrasound "fuzzy-sound."  Because they are not all that accurate.  Sometimes there are shadows and things.

I have cysts on my liver.  Maybe that could be it?  I wish I was better help but good luck to you and we are all in great support of everyone here.

 

Karen

pinky104
Posts: 574
Joined: Feb 2013

I don't have a clue what even half the things you mention are, but I want to tell you that my first time around with UPSC (which was an adenocarcinoma), I had cancer in the uterus, both ovaries, the omentum, and the small intestine and was stage IVb.  I went into remission after surgery and six rounds of chemo.  Seven years later, this year, I was found to have a recurrence with cancer wrapped around the ascending colon, in the peritoneum and the paracolic gutter.  Again I had surgery and more chemo, and I'm in remission again.  The doctor did sound like he thought it might be back again in 5 years, and if so, I'll be fighting it again, but the good news is I'm still alive in the meantime.  I'm doing a little more to try to prevent it this time, taking Turmeric/Curcumin and Metformin, which should work on 4 of my 6 mutations found in my genomic testing.  I also have a stable liver cyst, but I think that's different from a nodule.  From my days of being an ER coder, I know that nodules are watched over a period of time to see what they do.  They aren't necessarily going to be cancers, as you already seem to know. 

I hope you get some clarification of what your report means tomorrow, and I hope you have a successful progression of your cancer treatment.

janaes
Posts: 800
Joined: May 2016

Im sorry you are going through all this confusion. Its not fun at all.  I had so many doctors telling me different things after my surgery. A radiation doctor told me i would need chemo and radiation. A specialist in gynocoist cancers tod me no chemo just bacytheropy. My pathology report was incomplete so for a time that didnt help. I was on such a roler coaster. I finally went to a third doctor with some very spesific questions. This third doctor gave me the rest of my pathology report and went home after talking to him and after of course talking to the wonderful ladies here could finally piece the puzzle together.  My gynocalogical oncologist was way wrong.  It was so sad too because he was there for my surgery. After i had the full pathology report it clearly stated that MMMt was in the cancer.  I did have a tumor board look at the cancer also.   To this day i dont trust that gyncological oncologist and do not go back to him for follow ups. 

I hope you get this all figured out for yourself.  Figuring this stuff out is the hardest part. 

Janae

evolo58
Posts: 293
Joined: Dec 2017

Well, the second doctor cleared things up.

Some final hopes were dashed. Yes, I might have mixed serous uterine carcinoma. No, that won't affect anything. Even if the serous tumor is only about 5% of the cancer, it still is an awful gatecrasher, it can still go out of the uterus like mine did, and we sill have to treat this like UPSC.

No, there is almost no chance that the nodules on my omentum and peritoeum were due to surgery scars. Not quite sure why my current surgeon didn't rule that out immediately. Still IVB.

But this doctor wasn't all gloom and doom. Yes, the statistics aren't great, but she agreed that they were compiled at a time when current protocol was not standard, and the population involved is much older. Under current protocol, she has seen improvements in DFR and OS, though not dramatic. (it's not like 4 or 5 years DFR for most women!) She advised me that if I was to look at papers and journals, focus on those post 2012 gathering more-recent data; NOT the ones using data from 2000 or 2005! Things have changed. Unfortunately, since this is a rare cancer, not nearly as quickly as the well-known cancers. But they have changed.

And most of all, yes .... she HAS seen women in Stage 4 UPSC go beyond that five-year mark.* Common ... no. But she has seen them. She encouraged me to not give up. It is NOT impossible (as I know from some of you ladies here). The fact cancer appears to have gone to my omentum and perioteum does NOT mean I'm screwed. It all depends on my reaction to chemo and what they can take out of me, as well as factors that absolutely no one can know right now ... not even the doctors. She was positive. Honest ... no puppies, unicorns and rainbows ... but she did not kill my hope, and in fact, encouraged me. That alone was great!

The only thing that ticks me off is that my current doctor did not recommend me to go on the Metformin clinical trials. Right now, they're aound Phase 3, so results are encouraging. Unfortunately, since I'm on chemo, I'm not eligible for that trial at the moment. Why wouldn't she recommend me? I guess I'll have to ask her.

So the news was good and bad. But at least I'm not confused.

*My current surgeon told me she saw NO ONE go past that five-year mark, so yes, that's a whole lot more encouraging!

The second doctor also cleared up the confusion re pallative care. My current surgeon recommended that immediately ... well, because that surgeon's interest is pallative care. This second doctor's interest is UPSC. Pallatiive care is not exactly the same as hospice care. It's designed to make patients feel as comfortable as possible in whatever treatment they choose; whether surgery or not. It might have been nice if my current doctor/surgeon cleared that up! I was almost ready to hang myself off my porch after her wonderful bedside manner. :(

I was recommended to do the other two neoadjvuant chemos under my current surgeon, since the second doctor would recommend the same protocol and it would be silly to travel so far to do the exact same thing or delay my chemo to make new appointments, and if insurance permits it, and I decide to go with this second doctor, I can have this second doctor's team do the surgery. But I have time to think about this. The second doctor said that if I was OK with it, she will look at future test results and offer input. I like this second doctor. A whole lot.

In another odd note, re the puppies, unicorns and rainbows, we went to lunch afterward, and my husband and daughter got the food to bring home. Looking up, I saw a tiny bit of rainbow. :) No unicorns or puppies, though!

takingcontrol58
Posts: 259
Joined: Jan 2016

I was diagnosed with Stage 3, Grade 3 endometrioid adenocarcinoma in Oct 2014. 
Two months after surgery,cancer metastasized to my liver, spleen, vaginal cuff/outer
rectum and had nodules on my spleen, lungs and outer colon.  I advanced to Stage IV.
After one month on metformin, 88% of my tumors vanished. I was NED five months
later and have been in complete remission ever since. It is now over 3 years since I
was diagnosed. I started the metformin after 2 chemo infusions and continued for
a total of 6 infusions only, no radiation. I had miraculous results on metformin and
continue to take the drug, thoughI was never on a dose as high as in the trial.

I was in the trial you spoke about and got out of the trial after one month. You don't need
to be in a trial to get on this drug- it is generic and costs $5/month. It is considered one of 
the most essential drugs in the world by the WHO. This drug saved my life. Unfortunately,
my results will not be in the trial results.

My integrative oncologist,who I met with after 2 chemo infusions, put me on the drug.
I would highly suggest you get on the drug while you are getting your chemo. 
If your oncologist won't put you on the drug, speak with your family doctor.
It is that important if you are Stage IV.  

You said you have high levels of beta catenin- I had the mutation CTNNB1- which is the 
result of too much beta catenin and it activates the WNT/B catenin pathway, one of the key pathways
mutated in EC. Metformin inhibits the WNT pathway.  I would highly recommend you get genomic
testing on your tumor specimen to find out all your mutations. I recommend Foundation One. They are state-of-the art.
Perhaps you have the same mutation I had. Metformin may address some of your mutations,
but you have to address all that is driving your cancer, including the health conditions that led to your cancer.
For me, metformin also addressed my high insulin, glucose and insulin growth factor hormone levels- all
causes of endometrial cancer.

I wouldn't believe what your surgeon says about no one going past the five year mark.  It was
assumed i had 4-6 months to live by MSKCC, the top cancer hospital in the country. That was 
3 years ago. Doctors are not psychics. These top cancer hospitals don't treat cancer correctly
which is why they have such high failure rates.  They don't think "out of the box.' An advanced or
metastatic cancer patient needs an integrative treatment approach to heal cancer- which means
much more than just standard cancer treatment.

You have to heal your cancer, since cancer is "you." Your cells growing out of control. It is not a monster.

Takingcontrol58

evolo58
Posts: 293
Joined: Dec 2017

That was pretty much what the second doctor said ... that she has seen patients go beyond the five-year mark. Since her specialy is UPSC, I would tend to believe her. Honestly ... I liked her right away. While she spoke briefly about statistics when I pushed and she did not brush me aside, she did not want to dwell on them. Nor should I!

I did not have insulin or glucose issues before this, so I'm not sure if I can get Metformin that easily. I could ask my endocrinologist if worse comes to worst.

Might be time to ask my current surgeon about genomic testing and etc. and be a little more pushy. I know the second doctor's facility has a tumor registry where you can sequence your tumors, pinpointing them for future trials and treatments. I might want to ask my current facility if they have this. I have an appointment for genetic testing in my next chemo. I could ask that doctor. This might be the decision-maker for me as to which facilty I want to have my surgery. Thank you for reminding me! 

I'll look into Foundation One as well and ask my doctor about that, too.

EDIT .... OK ... the second facility DEFINITELY has a department that does genomic testing. Quite the webpage on it! Not quite sure of my current facility, but I'll keep looking. Right now, what I'm finding is more blah blah blah than informative.

I do have to remind myself that I'm fighting for my life here. Literally.

takingcontrol58
Posts: 259
Joined: Jan 2016

Metformin targets multiple pathways and genes involved in the cancer process, including
cancer stem cells and angiogenesis (creation of new blood vessels that cause metastasis).
I posted a document on this board listing about a dozen of them a few months ago.

Chemotherapy targets none of the processes involved in the growth and spread of cancer.

Don't worry abou insulin or glucose issues, though you should have these markers tested.
Especially insulin growth factor hormone.  Metformin does so much more. At minimum,
it sounds like it will address your beta catenin issues. And there are no cancer drugs that
target this pathway that is mutated in many popular cancers.

Takingcontrol58

evolo58
Posts: 293
Joined: Dec 2017

But I guess this is where I'm getting confused again. Unfortunately, because I already had chemo, I'm not eligible for a Metformin trial and even if I were, there is a chance I'd be in the placebo group. At 4B, I can't afford that prospect.

I don't have diabetes. I sometimes go pre-diabletic with my A1C levels, but nothing to merit any drugs for it and recently, my A1C was fine because I'm trying to cut down on snacking. (I'm hypothyroid, and need to see an endo every six months because I also have Graves. I was hyper before I was hypo ... got nuked.)

So what doctor will give me Metforimin if I DON'T have diabetes? So far, it doesn't sound like either gyno onco doctor I saw will be willing to do that. I suppose I could steal from my husband's supply, but I don't think THAT would be a good idea.

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I'm going to send you a PM...hope that is ok

SF73
Posts: 288
Joined: Oct 2017

After getting a call from my oncologist, my PCP did not hesitate to prescribe me Metformin even though my fasting glucose was in 70s-80s  and Hb1ac was 5.1%. After being on Metformin for a month we just measured my Hb1ac and it is 4.8%, I guess that's as low as it can be. Not sure if Hb1ac would be very accurate during chemo since the hemoglobin levels keep varying throughout the treatment. I also dont know if Metformin could help me in my cancer treatment since I still don't have the genomic profiling of my tumor. (it is a long story that involves bureucracy, incompetence, and having too many cooks - CPMC,  UCSF, and Stanford) Even though I don't know if I have the mutations that Metformin is shown to work, I figured I will take it after learning the anti cancer properties of it from takingcontrol58.  Thanks again for sharing your story, takingcontrol. I also learned from this forum that Metformin interacts with the solution used in the CT Scan with contrast. I think the current recommendation is to stop taking Metformin the day of imaging as well as the next 48 hours. So please check with your doctors if you are scheduled to have a CT scan. 

takingcontrol58
Posts: 259
Joined: Jan 2016

Yes, you have to stop taking metformin for a few days when you have a CT scan.

I don't get CT scans anymore, only ultrasounds. I want to avoid anymore radiation.

Takingcontrol58

takingcontrol58
Posts: 259
Joined: Jan 2016

I would recommend you speak with your primary care physician or your endocrinologist to get on metformin.
Metformin is "officially" called a diabetes drug, but it has many more anti cancer properties, very likely because
it lowers the levels of the key causes of cancer- insulin, glucose and insulin growth factor.  It targets the
inflammation and insulin pathways in our body which are frequently mutated in cancer.  It also targets
antiogenesis (cause of cancer metastasis- new blood vessels are formed by VEGF, vascular endothelial growth
factor) and cancer stem cells (aren't killed by the chemo and go onto form new cancer). It targets the 
mitochondria, so your DNA replacates without mutations. It does so many things for cancer it is amazing.

I was never diabetic, but pre-diabetic.  That alone is a reason to be on it, so you don't advance to
diabetes.  Then you would have more serious problems.

I will find some good articles on metformin and beta catenin- there are many of them at the
website of the NIH - www.pubmed.gov. You can print out an article and bring it with you
when you see your doctor.

Every oncologist should know the popular mutations involved in the cancers they treat, but
most don't and every person should automatically be tested for those mutations but they
are not. Oncologists don't know much about all that is involved in cancer or perhaps they
are just told by the facility they work for not to do these tests, because there are no cancer
drugs that address most of the popular cancer mutations. If they don' have a cancer drug to
recommend, they usually will not recommend another drug, when many existing drugs are
known to target cancer yet they are not cancer drugs, like aspirin and some antibiotics.  I also
took doxycycline, a popular antibiotic that is known to target cancer, as it kills bacteria that can
get into the cells. Used to treat Lyme disease.

You should really get your tumor tested so that you know all your mutations- metformin may
only target some of them and you may have to address other mutations differently.
But first you have to know your mutations so you know what to address.  The pathology report
does not give you that information.

It is really up to you to be in control of your cancer and your treatment.  You need a doctor that
thinks "out of the box."

Takingcontrol58

evolo58
Posts: 293
Joined: Dec 2017

PMs are fine ... provided I enabled them, and provided I can find where I can see them. I'm still trying to figure out this site. :) But thank you! (EDIT ... it came via my e-mail, so I did get it. FIxed a setting, so hopefully, I should be getting proper PMs. I'm still getting "access denied" when I try to get to the contact form, but it may take a while to "take". But I DID read your message. Thank you!)

I'll ask my PCP or my endo. The endo MIGHT be a better choice, but I'll have to see. Thank you again!

janaes
Posts: 800
Joined: May 2016

Evolot58

Im so glad you are getting aswers to your questions. Im glad you are seeing lots of doctors and taking advice from the ladies here on the group. Im glad you are not giving up an pushing forward. Knoledge is power. Im comfident you will get your answers and eventually know where and what to do with your situation. 

Love janae

janaes
Posts: 800
Joined: May 2016

Sorry i h

Added a t to your name

evolo58
Posts: 293
Joined: Dec 2017

No problem. It seems that I have "sausage fingers" all over the place (I usually know how to spell ... really!), and I'm afraid I can't blame the cancer for that. :)

Looked into Foundation One ... unfortunately, it's way, way out of my budget. Just paying for current treatments is going to be daunting. It seems that a local cancer center facility, however, is doing its own version of tumor sequencing, so if the price is more managerable, I might want to look into that. Right now, there are two nationally well-known cancer facilities within  a decent driving distance from me both NCI-recognized, and I'm looking into either for surgery. I'm getting my treatments in one of them. The second one (the one I went to for the second opinion) is the one with the sequencing, and it may tip the scales for me. For now, however, all of us agreed ... doctors, I and family members ... that I should stick with my current facilitiy during neo-adjuvant treatments. Sometime around the third chemo session, however, I will need to decide, so I'm trying to gather info now. The second one is the one with the doctor who has done much research into UPSC ... another positive point. The hospital itself, however, ranks slightly below the one I'm currently in. (Nationally ranked.) 

takingcontrol58
Posts: 259
Joined: Jan 2016

Evolo58,
Foundation One has a financial assistance program.  I would suggest you call them
directly and inquire about this.  You may get the testing for free. They are one of the most
highly respected testing organizations and are working with the NIH.

 

Takingcontrol58

takingcontrol58
Posts: 259
Joined: Jan 2016

Evolo58,
Foundation One has a financial assistance program.  I would suggest you call them
directly and inquire about this.  You may get the testing for free. They are one of the most
highly respected testing organizations and are working with the NIH.

 

Takingcontrol58

pinky104
Posts: 574
Joined: Feb 2013

I first had stage IVb UPSC 7 years ago.  I had surgery and chemo then and went into remission.  At four years out, I had pain and a tiny mass was found in my paracolic gutter, but my GYN/onc watched it with scans for a whole year and decided it hadn't grown, so it wasn't cancer.  Early this year, it grew dramatically.  My CA-125 went up 874%.  I again had surgery and chemo and am again in remission.  So I'm one of those long term survivors you've heard about.  I had genomic testing through Foundation One.  I applied for financial assistance and have not received a bill, although I know my insurance did not initially pay for it.  Foundation One made it sound like they wouldn't bill me and they'd go three rounds with my insurance company to try to get them to pay.  Their income limits were much higher than I expected they'd be.  I thought I'd probably have to pay part of the bill, but so far, so good, no bill.  You don't have to be a poverty case to qualify, either. 

After receiving advice from takingcontrol58, I asked my oncologist about taking Metformin.  He informed me about side effects, like lactic acidosis, which can be fatal.  He said to ask my PCP about how often the side effects happen.  I have never had a problem with diabetes or pre-diabetes.  My PCP's PA had already put other "informed" patients on Metformin who had asked for it and he was totally willing to give it to me.  He had read up on it.  I'm now in a one month period where I'm taking half a pill a day to see how I do with it.  Next week, I'll go in for blood work and if I'm doing okay, I'll up my dose to a half a pill twice a day.  He said I might need to get a glucose meter, but if I feel at all funny, I just have some orange juice, and I've been doing fine.  Takingcontrol58 knew about 4 of my 6 genomic mutations found by Foundation One and said that Metformin would work on them.  My oncologist, when reading what she'd said, commented that she'd certainly done her homework.  

I understand that you can't let yourself get dehydrated with Metformin, so be extra careful to drink in hot weather.  I've also started taking Turmeric/Curcumin in the last couple of months, so I hope between that and the Metformin, I can at least have a longer remission the next time.  My GYN/onc had acted like he expected another reoccurrence in the next five years when I last saw him (but that was before I decided to take these two drugs).  I hope he's wrong.  I have read that with ovarian cancer, the recurrences last shorter and shorter periods of time over the years, and since UPSC is like a close cousin of ovarian cancer, that's probably true with UPSC, too. 

Good luck to you, Evolo58.   

evolo58
Posts: 293
Joined: Dec 2017

How long ago did you use Foundation One?

Problem is, it sounds like a gamble for me. If I'm refused by FO and my inusrance company, I could wind up paying $7000+, and I don't have that sort of money right now. I'm continuing to inquire at that second facility, and would like to know how similar their sequencing is to FO. Like FO, they aren't listing pricing, but I've been looking at other university genomic programs, and with considrable scrimping, if their prices are the same, I might be able to afford that. The thing, it seems, is to find a genomic source from a credible institution that tracks these mutations. If the Uni program doesn't do that effectively, then that won't be very helpful.

But I'm not ruling FO out. I know that a doctor can be helpful re insurance, though insurance usually isn't that generous. I suppose I could call the insurance company and ask it directly.

I'm still trying with the Metformin. It's worse than pulling teeth. But patience and presistence is a virtue, I hope! I'm guessing that either genomic testing may be of assistance here, since some mutations, I guess, would NOT be helpful with Metformin. Honestly, one of the most frustating things about UPSC is how many standard conceptions it breaks. "Well, USUALLY, this doesn't happen, but in SOME women ...."

takingcontrol58
Posts: 259
Joined: Jan 2016

Evolo58,
You have to contact Foundation One directly.  They will have you fill out a form
to see if you qualify for financial assistance.  Then you will know in advance
if it will be covered. You have nothing to lose to ask them. My testing 
was done in Jan 2015.

This is what a friend of mine did. She called them first to know they would
pay for it. Then she worked with the doctor to send in her tumor sample.

Takingcontrol58

 

 

evolo58
Posts: 293
Joined: Dec 2017

I finally talked to someone from the university. While their program is similar to Foundation One, it takes months to get results. FO takes weeks. The person had no idea as to the cost of the university program. Also, you need to be approved. It's annoying that it all seems so hush-hush in any case.

I am seeing a genetic counselor next week. I might be able to ask more then about Foundation One. Right now, it's the holidays, and I'm not expecting miracles re anyone getting back to me.

Since my tumor isn't even removed yet (this chemo is neoadjuvant), I guess I have a little time to sort things out. But whichever program I choose, I want to send it SOMEWHERE to be sequenced. It's not exactly encouraging, though, when the Uni rep isn't entirely enthusiastic about the Uni program!

EDIT.

My PCP is willing to give me at least a low dose of Metformin. So that is some development.

When I talk to my genetic counselor and/or message my doctor, I will talk ask more about Foundation One re financial assistance. If I am rejected for financial aid, it will definitely tip the scales if the second faciiity approves me for their sequencing program, even if it does take months. It will TAKE months for me to get through the second round of chemo after surgery (3 sessions @ 21 days). To me, the main thing is to be approved for SOME sort of sequencing program ... have my tumor examined for any mutations that impact my treatment in the future. Foundation One would be optimal, but I will not put my family into debt to do so if I am rejected for aid. It looks like the FO financial aid application form is pretty basic ... nothing particularly shocking. As takingcontrol58 indicated, nothing ventured and all that. Having a possible Plan B is actually a little comforting, even if that is not 100% what I want. The idea is to be proactive and move forward and get a genomics process moving.

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