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Just diagnosed with UPSC-- advice

ConniMS
Posts: 2
Joined: Apr 2013

Hi, I have had tumor removal and and then a hysterectomy 2 days ago.  I'm recuperating at home now until my appointment next week to get the pathology results from the surgery. That will determine the type and number of treatments. I just lost my husband yo pancreatic cancer last May, so I know much about the port and treatment options. If anyone is dealing with  the beginnings of UPSC, I would love to have a friend with the same issues. Also, I would appreciate survivor comments. Two weeks ago I had no idea about anything-- had just had a clean bill of health at a routine physical. My email is cmshelnut@aol.com if anyone has time to communicate.  Conni

lucy07
Posts: 48
Joined: Apr 2011

Hi Conni

I WAS DIAGNOSED WITH UTERINE CANCER THREE WEEKS BEFOR MY HUSBAND DIED FROM CLL & LYMPHOMA. TWO MONTHS AFTER HIS DEATH I HAD MY SURGERY AND THE TREATMENTS FOLLOWED UP. THAT WAS THREE YEARS AGO (4/23/10). LIKE YOU I WAS ALL ALONE BUT WE CAN DO IT ANE BEAT IT!!!!! TODAY I CAME BACK FROM MY SONOGRAM OF THE BREASTS, I AM SCARED AND ALONE (AGAIN). SOMETHING IS NOT RIGHT AND I HATE WAITING FOR THE RESULTS. I GUESS I'M NOT REALLY HELPING YOU. SORRY, BUT I THING WE WILL BE OK. KEEP THINKING POSITIVE

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

Oh my gosh, not only are you both dealing with a cancer diagnosis in your lifetime, but husbands whom have passed from cancer.  What a tragic situation and how life truly isn't fair to  many of us, but you both seem to be holding your own.

Conni, if you have questions on UPSC, I can't comment as mine was a different type MMMT, but as aggressive.  If you look for a heading topic a few below yours entitled, UPSC - SURVIVORS GREATER THAN 5 YEARS -- you might find some inforamtion to guide you.  Definitely enough current gals on here who can come to the plate and help you.

Big cyber hugs to you both...keep the faith we somehow do endure....

Jan

lucy07
Posts: 48
Joined: Apr 2011

Thank a lot Jan!

On a happier note my daughter just raised over $400 for Relay for Life and she was a quest speaker as a care giver Smile

ConniMS
Posts: 2
Joined: Apr 2013

Two weeks ago I learned I had a problem. Now I've had a tumor removed and almost everything around my uterus-- including 2 pieces of liver, diaphragm cysts, 25 lymph odes, and things I can't pronounce. Day--3:  my timmy still hurts, but the swollen abdomen is going down.  Today  they found no remaining cancer in my insides. But you bet I'll still take the chemo and radiation. I won't stop, knowing that walking away could be suicide. I'm starting the path and next will get a port and a wig. Thanks to all you helpful ladies. I've been so scared. Conni

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

glad you are doing okay since your surgery.  Sorry you are on this journey. Do since you have not got your pathology report yet, do you know for sure it is UPSC?  I have stage 3-C UPSC  and had the sandwich treatment of chemo and radiation.  If I can answer any questions you might have, I would e happy to do so.  I am happy to hear that you plan on getting a port.  

i know you went through chemo with your husband, but it may be different for you.  Use you meds that they give you for nausea.  Drink plenty of fluids and keep ahead of the constipation.  

Keep the positive attitude and enjoy each day.  In peace and caring.

cheerful
Posts: 115
Joined: Apr 2011

Hi Connie:

 I would like to help you by giving you my advice regarding UPSC.  I am 61 (nearly 62) and was diagnosed in February of 2011 with UPSC Stage 1 (a little over 2 years ago). At the time of diagnosis I was 59.  UPSC is a very aggressive and rare cancer which I am sure you must know.  I started taking Iron tablets in November of 2010 and took the tablets for a year since I was bleeding and going through about 2 pads a day.  I was bleeding for about 6 months and then I had surgery (a hysterectomy). I also was in the hospital for 2 days. My doctor prescribed Percoset to help with the pain and I also took it for a short while recuperating at home.

  My surgery was 3 1/2 hours long and was done by my GYN.  He nor I knew I had cancer at the time until the pathology report came back.  I did surmise though that I had cancer from the beginning and mentioned this to my GYN, and I had a couple of tests done in the fall of 2010, but they came back not showing anything as I had a large fibroid blocking it.  I then wanted to have surgery which I did. Once my cancer was diagnosed, my gyn then referred me to an oncologist who I met in the hospital.  I then saw the oncologist later that month and found out that it was UPSC.  It was a very scary diagnosis, and he told me many women had all stages of UPSC and some did not survive it which really scared me.  My gyn has over 35 years of experience in his field and is very knowledgeable about UPSC.  I live in the suburbs outside of Philadelphia, PA. My oncologist did also tell me that due to my younger age, the histology and my good medical history that I would survive the cancer which to me was a very big relief since my cancer was 5 centimeters (a large polyp).  He then explained that he was aggressively recommending chemo, radiation and additional surgery of having my omentium removed and lymph nodes analyzed.  So I went through 6 rounds of carboplatin/taxol (which is the standard treatment for UPSC) which I started in April of 2011 and completed the end of August of 2011 and then I went through 3 rounds of radiation. It is important to have a family member or friend with you during your chemo since you will need someone to drive you home from treatments and they will also give you great support during your treatments.

   During my 5th treatment of chemo, my platelets were very low so I had a Neulasta shot and a blood transfusion as I was very weak and once I went through this, I felt much better.  I actually though have very little side effects from chemo other than not being able to eat for a couple of days after having had chemo and was very tired also which I understand is very common going through chemo.  I decided not to have my omentium removed nor my lymph nodes sampled since I was very weak going through chemo and did not want to have the additional surgery.  My oncologist did say that if anything lit up on the cat scan, then he said I should have the surgery of the omentium removed  and lymph nodes sampled, but thankfully nothing lit up on the cat scan and it was clear and the results were good.  Also, UPSC is always a Grade 3 cancer.

  Also, my incision broke open after I went to see my gyn less than a week later so I had to go back into the hospital again for 2 days.  I then had to have a home health nurse come to my house to treat the wound and the nurse ordered supplies from a medical supply company out in my area (Burman's) and she came to my house for 5 to 6 weeks.  I also had to see my GYN each week so he could check the wound.  The wound healed nicely and it was healed by the end of March.

  You will lose your hair after about 2 weeks of having chemo.  I immediately went out and bought a wig as soon as I had met with my oncologist and tried on several wigs. My hair took about a year to grow back before I had it cut again and it was rather long. I now have my hair in a shorter bob with a side bang and it looks very becoming. Before having had chemo, I had a one length bob that was much longer, but my hair was very thick and it constantly fell in my face, so I have decided now to just go with a shorter bob since I still have thick hair.  I am very happy to have all my hair back. The consistency of my hair is different though now since I went through chemo.  

  I am very happy and so glad that I went through all the treatments my oncologist recommended.  When I saw my radiologist, I asked him if anyone in Stage 1 ever did not go through chemo and he said there was one woman who did not initially go through chemo and her cancer (UPSC) came back on her as she went through chemo after it reoccurred, and then she passed away. He said she was my age when she was diagnosed so she was in her early 60s when she passed away.  To me, the odds were stacked against you if you did not go through chemo initially and especially I read on the Internet that there is a 43% chance of recoccurrence if you have Stage 1 and to me those were not good odds and it was not worth the chance of not going through chemo. So definitely go through chemo, and do not hesitate as your life is at stake!  

  I am very grateful for every day and am enjoying life.  I also am looking forward to getting away in July for a few days to travel to Baltimore, MD with my husband and son as I have not been away on a trip in almost 3 years.

  I have had several cat scans so far over the last 2 years and everything has come back normal with No evidence of disease for which I am very thankful and grateful.  I am now going to schedule another cat scan for June and my bloodwork (CA 125) for May. My blood work has come back low anywhere from an 8 to 11 for my CA 125 level.   Anyway, getting a cancer diagnosis does change you and you have to live your life each day and enjoy it to the fullest.  I had wonderful support from my family and friends going through the treatments.  I understand that the first 2 years are the most likely of getting a reoccurrence, and so far, so good and am hoping that I can continue to remain without evidence of disease for now and for the future.  I have changed my eating habits for the better and am eating a lot healthier since I was diagnosed with cancer.  

  My son who lost over 100 lbs. by cycling and changing his eating habits has been encouraging me by changing my eating habits for the better. He is 18 years old.  My son has been cycling for just about 4 years and has rode nearly 19,000 miles on his mountain bike. He enjoys cycling a lot and is out riding as much as he can.

  I am very sorry to hear of your husband passing away from cancer.  I hope that time and your great memories of your husband has helped you over this past year. My thoughts and prayers are with you.

  I do look on the UPSC board just about every day although I do not post that often. There are wonderful ladies on this site and they are all very supportive and very caring.

  Good luck with getting your results back (I hope you have an early stage of UPSC) and do keep us ladies informed. 

  If you have any questions from my post, you can e-mail me on the UPSC website.  I hope I was of help to you.

Cheerful

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

Hi Connie,

I was also diagnosed with UPSC stage 1A just a few months after Cheerful.........June 2011. I'm sorry to hear of your diagnosis, but glad you've found us. It's scary to find you have cancer, and having a rare and aggressive one is very shocking to hear. Coming to this forum has been a great support for me, and I've gained much information from the other ladies here. There seem to be quite a few of us with UPSC, which makes me wonder if it's on the increase or if doctors are just able to diagnose it with more accuracy.

I wanted to let you know that I, too, am doing very well almost two years since my diagnosis. I went through 6 rounds of chemo (taxol/carboplatin) but no radiation since this is not my first cancer and I was treated with radiation in 2007. But as far as treatment goes, this isn't as bad as it could be and once it's over you can pick up your life right where you left off. I worked through my treatment as a teacher, taking off chemo days and several days afterword. Work was a great distraction for me and made my treatment go by quickly.

Please come here with any of your concerns and questions......we're always here and ready to help!

Hugs........

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