Anyone with UPSC Stage 1A who chose not to have Chemo?

I can only speak of my

I can only speak of my experience. I had a D&C done in 2004 in which my gyn dr removed several polyps.  All paps done after were clean.  In 2011, I started bleeding severely and my gyn dr (same one) suggested another D&C.  There were polyps again and one had grown into a tumor and it was cancer carcinoma sarcoma (MMMT) a grade 3 cancer.   One week later full hysterectomy and it was stage 3C.  My gyn onc dr then suggested 6 rounds of carbo / taxol chemo treatment.  Every 21 days. She also said no radiation.  If I had to do it over again, I would choose to do the chemo again.  It was not as bad as I had heard and it went by rather fast for me.  I worked through mine except for really bad days.  I also went to work bald as it was not a big deal for me, and I went everywhere bald as a cue ball, but that was me.

There are other women on this board that have had different treatments and some have done none.  There also have been women on this board that had USPC cancer and fought like crazy and have lost their battle.  It is a personal choice that you have to make. 

My suggestion would be to talk to a good gyn onc dr, if you need to get a second opinion from another gyn onc dr, do some more research on your own before you make that decision.

You said you have already read some of the journeys others have had on this site.  I am sure that other women will be on here soon and give you support you need.  Praying for you. trish

 

No chemo

I was 1B and like Deborah wasn't given much of a choice. Everything removed and 6 rounds of chemo. Only question was whether to do internal or external radiation but definitely radiation. UPSC is extremely aggressive with a high recurrence rate even at early stages. 

• First and most important is to have a Board Certified GYN/Oncologist who has experience with aggressive cancers. Mine did not have to research papers. She knew the studies inside out.
• Chemo varies for everyone but for me was not that bad. I had it on Fridays and went to the Bark and Whine potlucks at the dog park on Friday evenings and then went on strenuous all day hikes on mountains on Saturday. I never needed the nausea meds. The IV steroids were enough. In fact, I gained weight.  But everyone reacts differently. I did have low white blood cell counts and had to do the neulasta shots.
• The hair loss really was the most difficult side effect aside from having to sit in a chair for six hours. I was going through a job search during treatment and business networking and interviewing was very stressful without hair and wigs are very uncomfortable.  Thought of sticking a light bulb in my mouth and going as Uncle Fester on Halloween.
• I have MS and parathesis (tingling sensation) has always been one of the ways it manifests in my body. I was taking gabapentin (neurontin) for insomnia which is another symptom of MS. Neurontin controls nerve pain and tingling. When the oncologist asked me if I had tingling, I asked how would I know if it was MS or chemo side effect.

Radiation is also not that bad. Usually for 1a only 3 treatments lasting 10 minutes each. UPSC is most likely to reoccur at the vaginal cuff. I read the statisics and sought advice from my cousin who is Chief of Medical Physics at a hospital in NY. He referred me to a colleague who said he saw UPSC a lot which is interesting since it is supposed to be rare. After reviewing my pathology, he said he would not recommend just observation. But then I was 1b with positive lymphovascular invasion. To be honest, my precarious employment situation was what drove me to agree to aggressive treatment. I wanted to do everything I could to have to do it only once. So far so good.

Kdrichards said:

UPSC Stage 1A

Thanks to everyone who has replied and shared their experiences. I am so glad I found this site. Since my post, I have met with my gun/ onc again and had a meeting with my family. We have decided to proceed with the Chemo for 4-6 cycles depending on how I tolerate it. I will have my port placed on 9/13 and start Chemo the next week-3 weeks on and 1 week off for 4-6 cycles. Chemo brain is still a concern since at my age I already have some memory issues but I guess we see how it goes. I am not crazy about the hair loss but I can deal wit it. I was wondering when I should let it return to my natural color (which I am sure is Grey, based on my roots). This will solve that problem!

I will let you know how things go and I'm sure I will have more questions that I don't know enough to ask just yet. Everyone stay well and thanks so much for your help!

Hugs to all!

Kathy

UPSC

UPSC, clear cell, type 2, grade 3.  5 wks post op

Wondering about timeline for port, and chemo/radiation/chemo treatment.  

I have CT scan on 9/4/13, back to Gyn/Onc on 11th.  How long is it usually to have port in, then to start chemo....trying to plalife getaway before starting treatment.  Also, is there " time off" between chemo/radiation/chemo treatments?

 

When I had to make a decision

When I had to make a decision on treatment in 2010, I was given three choices: chemo, radiation, or a combination, based on my comfort level - not on proven outcomes. I chose just chemo. 3 years NED this past June.

There has been quite a bit of research since. I came across this article on UPSC last year: http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=842

You have to do what you feel is right, after you research and talk to your loved ones

Wishing you the best.

Hi Kathy:

  In response to your post, I was diagnosed in February of 2011 with UPSC - Stage 1.  I met with the oncologist as soon as I found out that it was cancer as my GYN did my hysterectomy as I had been bleeding quite a bit for about 6 months.  It was a large polyp 5 centimeters.  I did not have my lymph nodes removed at the time because my GYN did not know it was cancer until after the surgery and my oncologist did mention I could have it removed later on, but as it turned out, my cat scans showed no evidence of disease so I had already gone through 3 rounds of chemo, was very tired and decided not to proceed with additional surgery as I felt very weakened and decided not to have the additional surgery since the cat scans turned out okay.

   After my 5th treatment of chemo, I had a Neulasta shot and also a blood transfusion as my platelets were very, very low.  I started my chemo in mid April of 2011 and finished with chemo 2 years ago today.  I had meet with a radiologist in June of 2011 and I asked him if anyone with Stage 1 did not have chemo and he mentioned to me that there was a woman who did not have the chemo with stage 1, her UPSC cancer reoccured, and she had chemo the 2nd time the cancer came back on her , but it was too late for her as she passed away about 3 years later.  She was in her early 60s around the same age I am now. I was diagnosed at age 59 1/2 and just turned 62 last month.  

  My Oncologist highly recommended that I go through chemo - he said to me that women in All stages of UPSC have died from this disease - I was really upset when I left his office that day as I went with my Mom as she is a breast cancer survivor a very early stage and was diagnosed in 1973 and is still living - she just turned 90 and am very grateful she is still alive and here.  However, after reading more information on the Internet and my oncologist later told me in March before I started chemo that due to my age, my good health and the histology of my cancer, that I would survive the UPSC cancer to which I felt, very, very relieved.

  And after reading about UPSC on the Internet and I read that there is a 43% chance of it reoccurring with NOT having chemo and I knew I wanted to go through the chemo rather than leave things to chance and have it reoccur down the road, so I decided to go through chemo. I am so glad I did and would never change my mind even today so glad I went through the chemo as I know I made the Right decision.  In the meantime, I bought a wig and lost my hair 2 weeks later after my first treatment. To me, losing my hair was one of the hardest to go through with having had chemo, but to me it was ALL worthwhile and I would not change a thing. I knew my hair would eventually grow back and it did and it came back fine. I had very thick hair and have it as a one length bob with bangs to the side and I love this hairstyle as it is a classic style.  My hair consistency changed after my chemo, but it still is pretty thick and I get my hair cut every 3 months now rather than every 2 months and get a bang cut every month.

  I made out very well going through chemo as my oncologist had mentioned many side effects before I started to go through chemo, but thankfully only had lost my appetite for a few days after chemo and felt a little nauseated, I should have taken the medicine I was given, but only took it a couple of times and that was basically the side effects I had.

  Also, my oncologist mentioned that I now have a 15% chance of the cancer reoccurring and to me those chances are low, but nonetheless, it is always in the back of my mind and I am always concerned when I go to see the oncologist and hope for good news. I also have changed my eating habits for the better and am eating a lot healthier.  I also lost a good bit of weight going through chemo probably over 25 lbs.  I have gained about 10 lbs. of it back in the last two years.  

  Anyway, after what the radiologist mentioned to me about this woman dying and not going through chemo initially and then UPSC came back on her and then she went through chemo although it was too late, I was so glad I made the right decision to go through with it. After reading a lot of posts on this board, the majority of the women have all gone through chemo.

  I hope I was a big help to you.  I live in Delaware County in a Philadelphia, PA suburb and the hospital where I had my cancer treatments was Crozer Chester Medical Center in Upland, PA and my oncologist is located right in the Cancer Center there about a floor above where I had the chemo treatments. My oncologist is very experienced and has over 35 years of experience and knows a lot about UPSC.

  I don't know what part of the country you are from, but if you are on the East Coast, do let me know - Crozer is an excellent hospital and I have been going there for many years to have various tests done and see other doctors there also.

  I really hope that you decide to have the chemo done - UPSC is a very aggressive cancer.  

  As far as work goes, it will depend on what line of work you are in and if you could cut back your hours that would be a help to you as you will need a whole day to go through the chemo and the day after to recuperate from it - they did the chemo on a Thursday or a Friday and I chose to have it done on a Thursday at the cancer center. If you could have your chemo done on a Friday obviously, then you would not need to take 2 days off from work and just take 1 day. But it will all depend on where you would want to have your cancer treatments done.  

  Good luck with your decision - and do keep us ladies posted on what you decide.

Cheerful

a/k/a Jane

 

 

 

 

 

Montefiore Study "Sandwich" Therapy

http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=842 I just came across this article yesterday. I suspect it is out here on our page somewhere but appropriate to add here for all of us to see. If you can't click on the link (sometimes I get it to work and sometimes I can't) I would recommend copy and pasting in the browser bar.

DUH!! - I think Akunzel posted the link earlier and had the link WORK! 

UPSC treatment

UPSC w Clear Cell, stage 2.  In a few minutes I go to the hospital to have my medi-port put in, will get my OTC & scripts tomorrow, and start chemo (Taxol & Carbo) on Monday.  Will do once a week treatments for 4 rounds & then scan & evaluate.  What an interesting journey we are all on.  The support here is very helpful.

UPSC chances of recurrence.

I'm glad you chose to do chemo. My mom was diagnosed with UPSC stage Ia, about 3 years ago. Her doctor didn't consider chemo. She only went 5 times for radiation. Since chemo wasn't an option, we're worried about the possibility of her cancer recurring.