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Newly diagnosed stage 4 uterine serous upsc

Acookie
Posts: 11
Joined: Aug 2018

Hi all

Just after some advice as this is all new to me. 

Three weeks ago my mother who is 62 was having bad stomach pains. We went to emergency room at the hospital and they found ascites and drained 4 litres. It was malignant.

She had an endoscopy and colonoscopy which were clear. She had a ct which they said didn't show much except for a thickened endometrial lining. So then we did a d&c which showed the uterus was cancerous and a polyp was cancerous. We then did a pet scan which showed malignant activity in the uterus and the left ovary. It showed malignant activity in the peritoneal and slightly in the liver too. Her ca125 blood test was 45.

We have met with doctors who have diagnosed here with stage 4 uterine cancer serous upsc. They have recommended a treatment of 3 rounds of chemo carbo/pax over 9 weeks. Then a hysterectomy. Then another 6 rounds of chemo. They are suggesting the chemo first the shrink down the cancer cells as my mother is uncomfortable with ascities. She will start chemo this week. 

Has anyone done this protocol of chemo/hysterectomy /chemo?

 

Does anyone have any advice they can provide? She is in a lot of pain. This is new to me so i am just trying to work it all out.

 

Thank you so much 

 

Alisha

Acookie
Posts: 11
Joined: Aug 2018

Also just to add that i am in Australia. But have found this board helpful for information. I can't really find any message boards in Australia 

Wannabeatit
Posts: 97
Joined: Dec 2017

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.

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

There have been some members who have had chemo before surgery, but it's not as common as having surgery first. There was a fairly recent thread where a couple of members noted that they had had chemo before surgery:

https://csn.cancer.org/node/316906

I'm sure there were others and hopefully they'll respond. However, you may want to edit the title of your post to something like: "Newly diagnosed stage 4 uterine serous upsc/Anyone have Chemo Before Surgery?" to widen the response pool.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

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.  

Acookie
Posts: 11
Joined: Aug 2018

Thanks for the responses!

I have noticed that chemo / surgery / chemo is uncommon. I am worried that it may make her condition worse but it seems to be the gyne doctors recommendation.

For pain she has the morphine patch and sublingual. It has helped her pain but she doesn't seem like the same person. But at least she is not in pain. It was getting really bad. I think its the ascites. 

She has no appetite because of the ascites but i am trying to get her to eat because i hear chemo can cause weight loss.

Thanks for heads up on constipation, we do have miralax here

 

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

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.

Donna Faye's picture
Donna Faye
Posts: 239
Joined: Jan 2017

Acookie, I am 78 so your mom is much younger. I have had cancer 3 times and still kicking most folks my age. I can see why the doctors would want to do the chemo first as it begins killing the cancer cells before they go in for surgery. This UPSC is so rare that docs have to go by their theory for many of us. I had UPSC in 2017 - surgery, then chemo and rads! It came back in 2018 so had more chemo and rads. Thankfully, am now NED ( no evidence of disease) and feeling pretty great for 78. So, get a second opinion if you are overly concerned but the acesties certainly started her journey in a painful way. Your love and support will mean so much.

I have a wonderful friend in Australia and still hope I can get there for a visit. Wonderful down under. Keep us posted.

DF

Acookie
Posts: 11
Joined: Aug 2018

Thank you all for comments and advice. 

Its so much appreciated. Also to add i have just had a baby a few months ago so i am trying to look after my baby and my mother. Its really tough but its something i want to do because my mother looked after me. And my daughter loves her so much. 

Luckily my husband is supportive. 

 

Just a question for those who have done chemo. How hatd is it the first few days after your first round? Is it bad ? Or does it take a few rounds of chemo for the side effects to happen?

Has anyone used the cold cap? Is it effective and are there any side effects?

 

Thanks

MAbound
Posts: 859
Joined: Jun 2016

I can't speak to the effectiveness of cold caps to prevent hair loss, but I used the slippers and mittens to prevent the worsening of neuropathy that set in after the first chemo infusion. They were worth every penny for that purpose and if I had to choose between losing my hair (which starts to grow back as soon as you're done with chemo) and getting neuropathy, I'd lose my hair every time. Neuropathy is incredibly painful and can be permanent. I really wish I had known about the slippers and mittens before I started chemo. Losing one's hair is a very emotional experience and can be a blow to one's sense of self, but it is temporary. If you have the resourses to afford all three...cap, mittens, slippers...go for it, but if you have to prioritize, go for the slippers first and cap last.

Acookie
Posts: 11
Joined: Aug 2018

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. 

Sugarfree
Posts: 2
Joined: Jan 2018

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. 

evolo58
Posts: 293
Joined: Dec 2017

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)

evolo58
Posts: 293
Joined: Dec 2017

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! :)

evolo58
Posts: 293
Joined: Dec 2017

I'll keep my answer short this time.

I started at 121.6. After the first treatment, it went down to 43.7 (just a little above normal, which is 35), then dipped below 35 after that. I still had a slight residual amount of cancer in my omentum during surgery. The neoadjuvant treatment did its job of shrinking the nodules, but I don't think anyone expected a miracle, unfortunately. 

CA-125 is one test, but it is not perfect. 

oldbeauty
Posts: 191
Joined: May 2012

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

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.  

Sugarfree
Posts: 2
Joined: Jan 2018

I'm at Sloan in NYC and I asked my gynonc and her PA if any of the patients had done traditional Chinese medicine. They said no one had owned up to it, besides acupuncture for pain. But, the PA said, they did have a chinese woman who rubbed some kind of pepper into her scalp to keep her hair from falling out, and it was painful but it worked! She didn't remember any further details. Thought I'd pass that on.

EZLiving66's picture
EZLiving66
Posts: 1343
Joined: Oct 2015

I was Stage II, UPSC and my CA125 was 14 before surgery, 14 after and 11 after chemo. That was almost three years ago and my doctor never ordered another one.  He said in my case, it was worthless. I only made it through three chemos after surgery but here I am, alive and kicking.  However, I agree that it's a good idea to ice the feet. My neuropathy continues to cause me great discomfort unless I take Nyquil before bed. For some odd reason it makes the pain bearable enough so I can sleep. Good luck to you and your mother. 

Love ,

Eldri 

pinky104
Posts: 574
Joined: Feb 2013

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.

Acookie
Posts: 11
Joined: Aug 2018

Thank you all for your replies. I called the cancer centre and they said they have ice packs available. 

Oldbeauty i am in Perth. So we are near the treatment centre here. But there are not many specialists here that deal with this cancer. So we have limited options. 

 

Also our oncologist is private and seems to be pushing the chemo over the surgery (we just had an appointment and he kept saying put surgery in back of your mind. Note he does chemo only and does not do surgeries). But i found a gyno surgeon who does oncology who i can get a second opinion from. 

Thanks for all your comments. This helpa to alleviate some stress. I have been so worried the last few weeks. And so has my mum. I have told her that there are survivors out there and that makes her happy. She isn't very computer literature though so i don't think she will post anything 

Acookie
Posts: 11
Joined: Aug 2018

Just another question, we have doterra frankensence oil at home. I have heard it may be beneficial for cancer. How is it used besides a diffuser? Is it safe to injest a drop mixed with water while on chemo? Thanks

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Not to push surgery or chemo but I would go with a second opinion.  They cannot tell you the grade or the spread of the cancer without having it removed from the body and send everything to a pathologist and let them slice, dice and test the tumor and nodes removed.  I had grade 3 stage 3 MMMT 7 years ago.  I had the total abdominal hysterectomy TAB and then 6 rounds of chemo and no radiation.  I had carbo/taxol.  Yes I lost my hair too as some of the other ladies stated.  Get to a surgeon and get there opinion of chemo first and wait to see if that works or would he prefer to do the surgery then chemo after the pathology report.  I do not know if they do it in Australia but there is testing on the tumor to find the best chemo to kill the cancer.  I did not have that done so cannot talk to it but a lot of the ladies on this site talk about it.  Good Luck with you Mom. And new Baby.  trish

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I have been deemed the the chemo, surgery, chemo route. So far I'm past the first chemo with taxol/carbo. What they say I have so far is Endometrial  cancer stage IVB, Metastatic adenocarcinoma, but of course they haven't gutted me yet except for a biopsy.  

Acookie
Posts: 11
Joined: Aug 2018

Thanks for your response ladymox, how is your treatment going? Hope it is going well and not too many side effects. 

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

My treatment is going well. I haven't got the fluid in the belly back and I am on the second taxol/carbo chemo. Between my first and second chemo my CA125 went from 120.9 to 36 so that is probably postive and the doctor thinks the tumor on my ovary is likley shrinking. The side effects are worst from day 3 to 6 but otherwise it is not so bad and I am still working part time when it's not the week of chemo.  I am hoping after the 3rd chemo they will give me another CTscan or even better a PET scan so I can see what going on inside me and schedule surgery.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

While I was initially nervous about the chemo/surgery/chemo route; I have come to like the idea. They can visually see if my tumor is shrinking, they can also beat back to cancer some so while I am recovering from surgery that it hopefully won't go wild while I wait to be better enough for more chemo. I am at Roswell Park in Buffalo, NY which is supposed to be in the top 3% of cancer treatment centers so I have to hope they know what they are doing, Yes this has the side effect that some of my questions can't be answered till after surgery, so that is a drawback.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I had ascities also, so far it hasn't come back in force but it's only been a month. While it didn't hurt it was very uncomfortable. It felt much better when I got 3.2 liters drained, which they did before the chemo.

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