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Just diagnosed with UPSC

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

Hi, my name is Sandy. I was just diagnosed with UPSC and have not yet seen a gyn oncologist. I am really frightened! I have been reading some of the posts here as well as researching online and it doesn't look good. I am wondering what the next step will be, how long treatment will take and what are my chances?? I have not yet been staged so I alternate between thinking I am stage 1 and then I swing to the other end of the scale. On top of that, I live in a small city and my insurance does not cover either of the specialists that are near to me so I may have to travel over 50 miles for treatment. They are also dragging their feet with the referral for treatment. Can anyone tell me their experience and timeline?

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

Hi Sandy!  Sorry you have to find us like this, but glad you did!  First...don't panic!  I am UPSC also and if everything is clear Nov 6th I will be three and one half years clear.  The kind we have is one of the worst in aggression, but they usually start with a full radical hysterectomy you might have already had then the sandwich chemo and radiation.  I had six rounds of Taxol/Carboplatin and five rounds of internal radiation.  You will lose your hair, but wigs are great!  No nausia for me and no neuropathy  either.  I have a two hour drive both ways to Houston and I drove myself there and back, alone, with no trouble.  There are quite a few of us UPSC'ers here that can go into great detail no matter what stage you are  when you need info.  Best advice at this point?  STAY OFF THE INTERNET, take one step at a time, ask questions, and BREATH!  We are here and you can email any of us prively throught this site, but we talk about EVERYTHING here, nothing is out of bounds!  Let me know if I can help.  Best, DebraJO

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

No, I have not yet had surgery. I received the diagnosis from my gyn on this past Weds and have not yet received the referral from my insurance for the gyn oncologist. The not really knowing anything more is driving me crazy! I have continued reading posts to various threads and they are very inspiring. Thank you for your support.

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

If you are waiting for a referal, ask in advance for an oncologist/gyn who has had experance and knowledge of working with UPSC patients.  Even if your stage is a 0 or one  when it is UPSC, the perfere treatment is NOT  just surgery.  We have heard of some here who's dr. recomended only the hysterectomy, but this is a grade C aggression cancer and you must hit it hard.  They threw the who range of treatments at me even though I was only a 1a due to the "C".  Keep reading the ppost here, start writting a list of questions for the dr. and us.  I think Ro10 is the board  expert on UPSC  She is on vacation to Austrailia, but will be back soon.  Read her treads and see how she just keeps on going!  Let us know your surgery date and the outcome aand we all will help you get through.  As our friend Jazzy1 says"cancer is a word, not a sentance!  Best Debrajo

SettledSue's picture
SettledSue
Posts: 23
Joined: May 2012

I have clear cell endometrial cancer, which is another very agressive form of endometrial cancer. As many others here will tell you, the most important thing for you right now is to have your surgery done by a gynecologic oncologist rather than by a regular gynecologist.       You should get an appointment with one as soon as you can. Good luck to you! Let us know what happens.  Sue

janh_in_ontario
Posts: 110
Joined: Sep 2010

Hi Sandy

I had the basic uterine cancer diagnosis in Sept 2010. Like you, the worst of this journey has been the not knowing and the waiting. My advice would be to try and read as much on here but leave the rest of the internet alone. There are many ladies on here who have stood in your shoes and undrstand what you are feeling, fearing, and thinking and while every one of us are unique, most of our stories have a common thread. I have been 3 years without recurrence but I have had many scares - and this is where I come to prepare before seeing the doctor. Take someone with you when you go and ask for copies of everything.   hugs, janh

 

 

 

 

 

 

 

 

 

 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

I'm sorry you had to find this website this way...

But welcome! and know that their are many knowledgable and wonderful ladies here.

 

I will keep you in my thoughts. Hugs

Crystal

ConnieSW's picture
ConnieSW
Posts: 622
Joined: Jun 2012

Hope you're feeling better after all this good advice.  You are dealing with the worst part of this now.  I am not prone to anxiety but it got a good hold on me during the waiting period where you are now.  Surgery, chemo, brachytherapy were all easier.  I wish I had found this site as early as you did.  Keep coming back.  We'll take good care of you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 549
Joined: Mar 2013

I would just say first, take a breath.  Next, as everyone here as told you, find a gynecological oncologist.  They know what they are doing with gynecological cancers.  Take another breath and take this one step at a time.  Come back and ask us any question you want.  The warriors here are INCREDIBLE and will help.  Keep in mind that everybody is different and we all are effected differently by treatment. 

 

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

I appreciate your advice so much. I will update when I am able to get a gyn oncologist adn see where I am going. Thanks again, Sandy

miachloe
Posts: 1
Joined: Nov 2013

Hi Sandy:)

I was just diagnosed with stage3c1 endometrial cancer. On Oct. 2nd I found out a endometrial biopsy came back cancer. Then on Oct.11th I had a robotic assisted hysterectomy with staging. And on Oct. 22nd is when I found out what stage. It has been an overload of emotions. I really know what you are feeling as everyone else on here does. I hope the best for you! Just do a lot of deep breathing and keep positive:) This is my first post/reply here and it's nice to know I am not alone. And that means...YOU are not alone either!:) 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Sandy,

you are not alone! 

 

Best of wishes,

Hugs,

Crystal

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

Just got a referral to the gyn/onc-waiting for an appointment. I hope it is soon! I hate that anyone else has to go thru this but I appreciate so much the compassion shown here. 

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hello Sandy,

I join with other UPSC sisters in welcoming you and sharing support on your journey.  

I was diagnosed with Stage 4 a year ago,  so can relate to the emotional roller coaster.  

There is lots of good advice on this list.  I agree, bring a list of questions, and someone to take notes if possible. When a friend wasn't available, I brought an inexpensive digital recorder.  I explained that since I didn't have anyone to take notes today, I'd like to record our visit to help me remember later.  None of the docs objected.  Also, be sure to get a number to call if you have more questions.

Thinking of you,

Sungranny

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Hi Sandy:

Sorry you had to meet here!   Anyway, concerning dragging their feet.   When you hear the word "cancer" we want that ripped out of us as soon as possible.  However, it doesn't always work that way.   When I was diagnosed, it took almost three months before I began treatment.   Then when I had a recurrence, they wanted to start chemo right away (which I didn't allow).   As a result of that, I now see a doctor that is 3 hours away.   So you see there isn't really any set rule and it is usually how a certain doctor likes to do it.

Just be your own advocate.   No questions is too little or too insignificant to ask.   Everyone's treatment is different and everyone's body reacts differently.   By the way, you are the one who really makes the final decision.   But when we are scared, sometimes we just go along with whatever someone says.    Also, you can get a second opinion too.

I hope all goes well for you.  

 

Kathy

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

I finally saw my gyn/oncologist yesterday! I liked him very much. He scheduled my surgery for 12/5. He basically confirmed what I had read here. He needs a release from my cardiologist( I had a heart attack 7 years ago) and already did a CAT scan. I do feel less anxious today. My husband came with me and he was great and took notes for me. Thanks again for all this amazing support.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 549
Joined: Mar 2013

Sandy, I was waiting to hear your report back.  It is good to have a "plan", isn't it?  Usually surgery is the first step.  Take it one day at a time and so glad to hear you liked your doctor.  I always think that is important because you are going to see this person quite a lot and will be talking to him a lot. 

 

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

I am sorry you have to join us.  I am glad you have a surgery date.  It is good that you like yor gyn/onocologist.  Do you know if you will have robotic or open hysterectomy.   My husband has gone with me to every appointment and has been a great support for me.  I think my initial diagnosis of UPSC 3-C was harder on him than it was for me.  He has been with me through all these years.

Come back with any questions you may have.  Remember to breathe and take one day at a time.  In peace and caring.

 

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

I am having an open hysterectomy and apparently he is taking everything! But, for some reason, I am feeling much less anxiety. No more knots in my stomach. I just wish they could schedule the surgery sooner. I will be seeing my cardiologist next week togeta release   for the surgery as I will have to stop taking some of my medications for a week or so. Once I have that release, they will try to move the surgery up if space opens. As it is now, I am looking forward to visiting my kids in Miami and spending Thanksgiving there with our extended family.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 549
Joined: Mar 2013

That is what I said to my gyn/onc the first day I met him.  I wanted my surgery immediately, and even though I had to wait a little longer than "TOMORROW", it was calming to walk out with a date. 

Enjoy your family and the holiday. 

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Sandy:

 

When they said I needed a hysterectomy (not for cancer), I wanted it done immediately too.  With the tremendous pain I was having I felt like I was dying.  I would literally curl up into a ball becasue of the pain.  But  had to wait (can you believe this) for seven (7) months.   The doctor wanted me on Lupron to make the surgery "easier" for him because of all my lesions.  He said the lupron would soften the lesions.   Of course at that time (even though I had a laparascopy and internal ultrasound), they did not know I had cancer until after the surgery.  Then a month later becasue they found cancer I had to go back in for staging surgery.  Yuck!

Anyway, make sure or check with your doctor that even though they are doing a total hysterectomy, see if they are also taking out the appendix and the omentum.   It seems that these two places are things were reoccurrences can occur more frequently.   Some doctors do take those out.  Others do not.   

My best to you on your upcoming surgery.

 

Kathy

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

I've been reading online about a relatively new research where they wash the entire abdominal cavity with chemo when surgery is completed. It has been used for several different kinds of cancer inside the abdomen. I haven't seen it used in uterine cancer, but it sounds really promising! I am going to ask my doctor about doing it when I have my surgery next week. It's probably to close but it can't hurt to ask.

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

I have not heard of this.  I had  cancer cells in my abdominal wash at the time of surgery.  But they were not suspecting my cancer to spread.  They thought I would have the hysterectomy and I would be done.  I had no symptoms before surgery.

since they have to mix the chemo when needed, I can't imagine they would have it in a timely manner during surgery.  I guess it might be possible if they already suspected you had cancer that spread.  I will be interested to hear what your doctor says.  

I know some people on the ovarian board talk about getting chemo through IP.  They have a port inserted in their abdomen and get chemo intra peritoneal.  But I have not seen anyone with uterine cancer getting chemo that way.

good luck with your surgery.

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

I had my hystorectomy etc last Thursday. I am hoping to go home today. This is the first major surgery I Have ever undergone. The staff and facility( Moffitt cancer center) are wonderful. I have an appointment next Friday to go over the test result and treatment recommendations. I was really surprised by how wiped out I am feeling! The doctors told me that they found cancer in my uterus and in my cervex. I hope that thIs is the whole extent.

Thanks again everyone for your support!

Sandy

ConnieSW's picture
ConnieSW
Posts: 622
Joined: Jun 2012

For the update.  Hopefully you are home now.  Take good care of yourself for at least the next 6 weeks.  You don't want to overdo and create problems with adhesions or hernias.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 549
Joined: Mar 2013

So glad to hear from you and you are finally on your way. 

northwestalaska
Posts: 8
Joined: Nov 2013

Sandy- Glad to hear the surgery is over. One step out of the way. I was diagnosed with UPSC July 26, 2011. I had surgery July 29th, then flew back to Alaska and had 6 rounds of carbo/taxol followed by three internal brachy radiation. NED since then. Take one day at a time, laugh whenever possible and plod along. The brave ladies of this site are inspiration and support, so rant, rave, cry and celebrate with your sisters here. I'll be reading along to see how you are doing.

Susette

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Glad you made it through your surgery.  Remember it is major surgery, so you need to take it easy.  Hope you get to go home tomorrow.  Glad you had a good experience at Moffitt.  Hope you get good results next week, too.  Take it one day at a time.  In peace and caring.

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

Well, it's been 4 weeks and I am feeling good. I had a big problem with nausea. Started eating normally on Christmas( my best present!) and have a lot more energy, although I still tire easily. I am also battling a insidious rash that started before I had surgery. Just went to my primary care again and he started as different treatment. I just hope it's gone before I start chemo on the 17th. The doctor says I am stage 2 and that the cancer was contained within the uterus and cervix. He biopsies over 20 lymph nodes and they were all negative! Also the abdominal washings etc. At this point I am feeling very positive.    Thanks. Sandy

 

ConnieSW's picture
ConnieSW
Posts: 622
Joined: Jun 2012

Way to start the new year.  Here's hoping your chemo goes as well asmine did.  I'd as soon not had the experience but it was much easier than I expected.  It's been nearly 1 1/2 years  and, like childbirth, the memories are fading.

Ann55
Posts: 43
Joined: Jun 2013

Wonderful news!  Happy Happy New Year.

 

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Sorry to hear about the nausea.  Glad it is better, too.  Your nutrition is important for you.

glad all your lymph nodes and abdominal washings were negative.  Good luck with your first chemo.  Continue to keep the positive attitude.   In peace and caring.

Sandy3185's picture
Sandy3185
Posts: 31
Joined: Oct 2013

2014-02-11 Its been a while since I last posted! I started chemo and had my second round last Tuesday. I have had a lot of side effects both times and they started sooner, have been stronger and are lasting longer. Now i am really afraidof the next round! Thse qnumbness inmy finwger tips is theleast of it, although very annoying. But the pain in my knees, ankles, feet and toes increased,sometimes it really hurts to walk. Problems with constipation, loss of appetite and problems sleeping due to discomfort. Hopefully it will wear off soon.

I talked to the radiologist/onc about my treatment after the chemo and I am very undecided. I kknow UPSC is very agressive, but I am really worried about the side effects. Dr. Whatley, mygyn/onc suggested a second opinion but, really, which radiologist would not recommend radiation? Have any ofyou opted out of the radiation?

Thanks everyone, Sandy

 

 

 

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Sorry you are having so many side effects and they are lasting longer.  I had radiation in between my chemo.  3 chemo, 28 radiation external, 28 hour internal, and the 3 more chemo.  I had the IMRT radiation and had minimal side effects.  I have not had any long term side effects that I am aware of.

some people did not get radiation, they only got chemo.   Maybe you don't want your second opinion from a radiologist, but a different gyn/ Ono and see if they recommend radiation.

i hope your next treatment goes better for you and the side effects are of shorter duration for you.  Are you starting your medicines for constipation a day or two before you have your chemo and then several days after chemo.  Are you drinking lots of fluids?  Have you discussed the joint pain with your doctor or chemo nurse.  They may have suggestions for what you could take for the discomfort so you can sleep better.  In peace and caring.

Hybridspirits's picture
Hybridspirits
Posts: 151
Joined: Nov 2012

Have you tried L-Glutimine?  I did that a day before chemo, day of and a few days after and it made the tingling in the fingers go away. I still got it for a week but it went away. Constipation,  i would agree get on it right away,  could try Miralax.  Pain is that from a shot?  I had the "nasty plasta (what I called it don't remember the name) was given suggestion of claridan d day before, day of and a few days after. Worked like a charm

second opinions,  I had oncologist second opinions and a radiologist seocnd opinion.  The radiologist didn't agree with mine, gave the reasons and then mine agreed witht eh second opinion

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 549
Joined: Mar 2013

Sandy, I wondered how you were doing.  I think Ro gave you some good advice and let me chime in with a few things too.  I had the chemo/radiation/chemo sandwich special and understand your pain and fear for my 1A UPSC.

I had pain in my hips and knees too.  I thought if THIS is what kind of pain people with arthritis have I know why they seek releif!  The first round pain was the worst, and I was fortunate that it was never as bad as that.  When I had finished all my treatment I asked my sister to find something to help with the joint pain.  I know it sounds crazy, but eggshell membrane capsules helped tremendously.  I still have stiffness (not sure if that is age or what!) but it is better than it was.  Check with your doc.

My trick to beat constipation was to take Miralax the night before chemo, a couple times the day of chemo, and for a few days after chemo.  You can check with your onc nurse to see what she thinks but my nurse said OK!!  I figured after major abdominal surgery the last thing I wanted to worry about was constipation!  I also have been taking probiotics for years and my colon thanks me.  In fact, I was given a slides from a presentation that showed how 1/2 of 63 cervical cancer patients were given probiotics and the other half wasn't.  (I am going to talk more about this under the radiation part below)

As for that eating?  I never imagined I wouldn't want to eat and then came chemo. I had to force myself to eat and as much protein as possible to help heal and keep the numbers up. If there is a dietician who specializes in working with cancer patients where you go maybe she can be of help.

Now, let's talk about radiation.  It absolutely terrified me.  When I walked out of meeting with him I cried like a baby.  The possible long-term side effects are frightening.  I talked to the patient advocate at the cancer center as I was scared and angry and that lovely woman listened.  She also said that you never have to do anything you want. It is always YOUR CHOICE to have or not have treatment. 

The short-term side effects are as terrifying as the long-term.  The slide show (mentioned above) illustrated how the women who took probiotics had a significant decrease in side effects.  A large number of the women not given probiotics were hospitalized with dehydration.  I have got to find that document!!

In the end I had the IMRT radiation because I want to do everything I can to kill this cancer forever.  I still hate the thought, but it was wanted I needed to do for me.

You can do this, Sandy.  It is hard and you will amaze yourself.  Promise.

Dee5678
Posts: 37
Joined: Feb 2014

Hi, I am too new in this journey to offer advice. Just wanted to say that it was good to read all your follow-up posts here. Thanks for doing that!  We are all rooting for you, Sandy. You are strong and you can do it. One day at a time!

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