Newly diagnosed stage 4 uterine serous upsc

I don’t have stage 4 UPSC only Stage 1 but there will be other wonderful women that can give you valuable info very soon. I am sure they will be able to answer some of your questions.

Acookie, I can't comment on the chemo before surgery, but I did want to say I am glad you found us.  Over the years we have 'heard' things that make us ask if the person is in the U.S. or not, but we welcome the world to chat with us.  I hope your mother is working with a gynecologic oncologist, they specialize in below the belt cancers.  

Have they given your mother anything for her pain?  Keep in mind that most pain meds are constipating - as is chemo - so Miralax (don't want to assume it is sold worldwide as this name) has become the best friend for most of us during the chemo.  

My dear friend and chemo buddy Pat had 3 cycles of chemo before surgery, then 6 after.  She is doing great!  She walks her dog 3-5 miles a day and is about the same age as your mom.  There's hope!  Your mom may not seem the same because she is scared and overwhelmed.  This is a serious deal and we all process the shock differently.  Just love her and support her and help her gather information.  You're not alone.

Acookie said:

Just a few more questions

Can you have a lower ca125 blood result and stage 4 upsc ? My mums result was 45 on the test a few weeks ago. I am thinking of asking the oncologist for a retest today when we see him.

Has anyonr had a contrast ct come back with no tumour or masses seen but then had areas come up on the petscan ? I think its odd. Does it mean the potential cancer on her liver is small?

Has anyone been diagnosed with upsc and it started with ascites? I have read this about people with ovarian cancer. 

I wanted to reply to your earlier question, about chemo, then surgery, then chemo again. It's called "neoadjuvant" chemo or "interval" surgery.  When I read about it online, some studies say that the length of survival is about half that of people who have surgery first, then all the chemo after. One reason you might have chemo before surgery is, there is a lot of cancer and you need to shrink it so the surgery can get everything out.  I had interval surgery - they couldn't operate at first because I had dangerous blood clots, but I did well on chemo and wanted to have extra chemo sessions at the end.  My onc said no. In retrospect I wish I had pursued it and gotten more chemo sessions somewhere else. But you have to have a lot of initiative and experience to do things like that. And it's hard when you are new to this. 

Thank you, Sugarfree, for adding that information.  I look forward to hearing anything else you may to add to the converstation.

Acookie, for me, and everyone is different, the achey joints kicked in on day 3 on the first chemo.  For me, it never seems as bad after that first treatment, but it is the lowered immunity that also kicks in where I needed to be careful where I was, who I was around.  I was told not to work in the garden or flower beds during that time. 

I had Carboplatin and Taxol, and hair loss started about 7 - 10 days after the first treatment.  I did not cold cap, and had a friend who just went through chemo who did it, and for her she said that was the most painful part of the chemo.  She did lose some of her hair, she has a patch in the back she just told me that is gone, but she just had a stylist friend fix it up some for her and she sent pictures.  I know there are some ladies who have done the cold cap and hope they chime in.  Again, everyone is different. 

I did not have a port, it does sound like most of the ladies did, but your mom is going to have quite a bit going on, so it might be advantageous for her.   

As for the CA125, my number never was high, I was diagnosed (dx) at Stage 1A, but it may not be a good indicator for UPSC anyways.  I still hang on for those results, but it never was high.  It does seem as though the CA125 reads high for those with Ovarian cancer, and some may suggest the HE4 test, so here is a link to an article with more information on that:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4342513/

A dear, dear lady on the boards used to say, "you are a statistic of one".  Stay away from Dr Google who usually has old information.  

You have a lot going on, with a new baby and helping your mom.  Please know that none of us fight alone.  We need the love and support of our family and friends.  

evolo58 said:

Neoadjuvant

I had that. From what I read (and I read about it until my eyes got blurry!), and from what the gyno-onco told me, it really doesn't affect overall survival as far as most people know. HOWEVER, it's a fairly new approach to this disease (I was diagnosed Stage 4B UPSC, by the way), so we can probably get a better picture ten or more years from now, and results could very well show much more promise. As far as I know, it's only really been a more-used approach within the last decade. 

I had a weird variation of UPSC that I've only seen once on this and another group. The tumor stayed wtihin the uterus. The pathology report states 1A, but that was after the three chemos, so it could have been a a slightly higher staging before. We will never know for sure.  That is one drawback of neoadjuvant therapy. Most of the time, the surgical pathology report is the final determinant of the stage. But with neoadjuvant treatment, it's a little murkier.

What got me in my case was that on a preliminary CT scan before the first round of treatment, the radiologist saw involvement with the omentum and peritoneum. UPSC is that special brand of cancer that can do that ... stay 1A within the uterus, but ... for lack of a better term .... jump somewhere else as well. It's not common from what I see here and elsewhere, but it does happen. So yup ... despite the Stage 1A designation on the surgical pathology report, I was still diagnosed as 4B. Lovely beast, UPSC.

Anyway, to shrink the nodules on the peritoneum and omentum, I had three treatments of chemo before, then surgery. I was scheduled for three treatments of chemo after. After surgery , there was some stranding after the third treatment that could have been dead cancer cells, could have been residual tissue, could have been ... but we're dealing with a capricious cancer here. So off I went for another couple of sessions, making the post-chemo count five; a total of eight if you include the preliminary three chemos. The onco-gyno made it quite clear that these last two were nothing to be too worried about. They were mop-up or preventative sessions.

At first, I was concerned about the extra two chemos but read, also here and elsewhere, that it's not unusual for an gyno-onco to add an extra treatment or two or three or more in the second round. It depends on the nature of your particular beast, and what you and your doctor feel is the right thing to do. Thinking about it, I guess it's not strange. After all, most women diagnosed with advanced-stage endo cancer  have six chemos after surgery, and neoadjuvant actually has two purposes: to shrink or eliminate nodules and tumors before surgery and to shrink or eliminate whatever is in there afterward. So when I broke it into those two distinct stages, it didn't seem so odd at all. Chemo is a PITA, however.

As for life expectancy? I like what someone wrote here once. All of us here, no matter what stage, have two percentages: 0% and 100%. As long as you're on this earth, you're 100%. I have read of and chatted with women who lived a decade or two after a Stage 4B UPSC disagnosis ... and they're still around, thank you. I have read of and chatted with women who passed the five-year mark. My one bit of advice to your mother is don't let ANYONE tell her how long she has, or deliver gloom and doom predictions based on general info. It's really different with each patient. She sounds like a fighter, and she appears to have a great caretaker. May she have decades and decades of dancing with NED. (No evidence of diseease)

I should also add that you should not panic when looking at studies comparing neoadjuvant to adjuvant. At first, the numbers may look grim, but since UPSC is rare to start with and neoadjuvant is still not a common method of treatment, the sample sizes are really too small to reach a satisfactory conclusion, as seen in this report:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4272666/

If I did not read the conclusion, I'd be sweating bullets!

Acookie said:

Just a few more questions

Can you have a lower ca125 blood result and stage 4 upsc ? My mums result was 45 on the test a few weeks ago. I am thinking of asking the oncologist for a retest today when we see him.

Has anyonr had a contrast ct come back with no tumour or masses seen but then had areas come up on the petscan ? I think its odd. Does it mean the potential cancer on her liver is small?

Has anyone been diagnosed with upsc and it started with ascites? I have read this about people with ovarian cancer. 

Hi Aussie Gal!.  I lived in Australia in 2012 when my first recurrence was diagnosed (I've since had a second recurrence...and I'm still here and doing well).  Where are you and your Mum?  In/near a major city, I hope so you don't have the added hassle of coming into town for the treatments.  Also, I would second the ice packs and you may have to do it yourself bc I'm thinking Medicare won't offer it, maybe perhaps if you have a platinum Extras Cover.  I have permanent neuropathy in my feet, which is bothersome.  Also, ask them to check her Vitamin B-12 levels and get them fixed if they are low.  Deficient B-12 alone can cause neuropathy. I lost my hair and it's returned to only about maybe one-third of the bounteous locks I once had 12 months past chemo.  You learn to be humble with this disease. But all in all, it's better than the alternative.  Best wishes, Oldbeauty.

I initially had UPSC in 2010 where I had mets to the omentum, both ovaries, and the small intestine.  I had a recurrence last year with mets to the peritoneum, retroperitoneum, rectum, ascending colon, and some muscle.  My CA-125 was 98 the first time and went from 14 to 129 in the two months between a routine cancer check-up and one a couple of weeks after surgery.  I'd been told not to worry about the 14, but I was worried and for good reason, the way the thing grew so rapidly.  It was found because I had a routine hemoccult test that showed bleeding in one of three stool specimens.  I went on and had a colonoscopy, which showed the cancer wrapped around the OUTSIDE of the colon (apparently, the colon isn't very thick, so the thing showed through).  I had a CT scan and then a PET scan a couple of days later, then was rushed into surgery the following week (before the cancer could cause an obstruction).

The answer to the question you had about how long it takes for the bad effects to kick in after starting chemo depends upon the type of chemo one has, but everybody is different. I had very few side effects with my first chemo of Carboplatin and Taxol.  I felt a little high from some of the steroids they gave me just before my first dose of chemo was put into my port.  I had mouth sores after either the first or second round of chemo, but they went away quickly with the use of a mouthwash the doctor prescribed.  I started getting short of breath after the second round, and by the third, I went along with the doctor's recommendation of having two units of blood transfused.

Things were very different with my recurrence.  I was given Carboplatin again, but the second drug I was given was Gemzar.  Gemzar is known for having a much quicker effect on the blood.  I was so fatigued, I couldn't get off the sofa one day.  The doctor had to lower my dose.  I eventually ended up allergic to Carboplatin, so I had to switch over to Cisplatin (with Gemzar) on my last round.  I didn't have any problems with the Cisplatin.  I again had two units of blood, but I had it later, during the fifth round of chemo, this time, as the symptoms didn't seem as extreme the second time, even though my blood counts were lower.  I still have chemo induced anemia almost a year after my chemo, and I won't be given any more blood unless it gets worse.

I was given Emend every time I was treated, in pill form the first time, and in an IV the second time.  That's a drug that helps prevent nausea and vomiting, and it worked great for me.  There was a time or two that I felt just a slight bit queasy.  I'd been given pills in case that happened, and I almost felt guilty taking one or two of them as the queasiness was so minor.

I know a lot of women have much worse side effects than I had.  I guess I was lucky.  I had a lot of people praying for me.

I wish you luck in taking care of both your mother and a baby.  You certainly have your hands full.

Sugarfree said:

I wanted to reply to your

I wanted to reply to your earlier question, about chemo, then surgery, then chemo again. It's called "neoadjuvant" chemo or "interval" surgery.  When I read about it online, some studies say that the length of survival is about half that of people who have surgery first, then all the chemo after. One reason you might have chemo before surgery is, there is a lot of cancer and you need to shrink it so the surgery can get everything out.  I had interval surgery - they couldn't operate at first because I had dangerous blood clots, but I did well on chemo and wanted to have extra chemo sessions at the end.  My onc said no. In retrospect I wish I had pursued it and gotten more chemo sessions somewhere else. But you have to have a lot of initiative and experience to do things like that. And it's hard when you are new to this. 

I had that. From what I read (and I read about it until my eyes got blurry!), and from what the gyno-onco told me, it really doesn't affect overall survival as far as most people know. HOWEVER, it's a fairly new approach to this disease (I was diagnosed Stage 4B UPSC, by the way), so we can probably get a better picture ten or more years from now, and results could very well show much more promise. As far as I know, it's only really been a more-used approach within the last decade. 

I had a weird variation of UPSC that I've only seen once on this and another group. The tumor stayed wtihin the uterus. The pathology report states 1A, but that was after the three chemos, so it could have been a a slightly higher staging before. We will never know for sure.  That is one drawback of neoadjuvant therapy. Most of the time, the surgical pathology report is the final determinant of the stage. But with neoadjuvant treatment, it's a little murkier.

What got me in my case was that on a preliminary CT scan before the first round of treatment, the radiologist saw involvement with the omentum and peritoneum. UPSC is that special brand of cancer that can do that ... stay 1A within the uterus, but ... for lack of a better term .... jump somewhere else as well. It's not common from what I see here and elsewhere, but it does happen. So yup ... despite the Stage 1A designation on the surgical pathology report, I was still diagnosed as 4B. Lovely beast, UPSC.

Anyway, to shrink the nodules on the peritoneum and omentum, I had three treatments of chemo before, then surgery. I was scheduled for three treatments of chemo after. After surgery , there was some stranding after the third treatment that could have been dead cancer cells, could have been residual tissue, could have been ... but we're dealing with a capricious cancer here. So off I went for another couple of sessions, making the post-chemo count five; a total of eight if you include the preliminary three chemos. The onco-gyno made it quite clear that these last two were nothing to be too worried about. They were mop-up or preventative sessions.

At first, I was concerned about the extra two chemos but read, also here and elsewhere, that it's not unusual for an gyno-onco to add an extra treatment or two or three or more in the second round. It depends on the nature of your particular beast, and what you and your doctor feel is the right thing to do. Thinking about it, I guess it's not strange. After all, most women diagnosed with advanced-stage endo cancer  have six chemos after surgery, and neoadjuvant actually has two purposes: to shrink or eliminate nodules and tumors before surgery and to shrink or eliminate whatever is in there afterward. So when I broke it into those two distinct stages, it didn't seem so odd at all. Chemo is a PITA, however.

As for life expectancy? I like what someone wrote here once. All of us here, no matter what stage, have two percentages: 0% and 100%. As long as you're on this earth, you're 100%. I have read of and chatted with women who lived a decade or two after a Stage 4B UPSC disagnosis ... and they're still around, thank you. I have read of and chatted with women who passed the five-year mark. My one bit of advice to your mother is don't let ANYONE tell her how long she has, or deliver gloom and doom predictions based on general info. It's really different with each patient. She sounds like a fighter, and she appears to have a great caretaker. May she have decades and decades of dancing with NED. (No evidence of diseease)