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

Kdrichards
Posts: 8
Joined: Aug 2013

Hi! I was recently diagnosed with UPSC and am 4 weeks post radical hysterectomy. My pre-op CTs were negative as we're all the lymph nodes, and other biopsies done at surgery. I had had a D&C and polyp removal 1 month prior to hysterectomy which established the diagnosis. Originally my surgeon interpreted the research for my stage of the disease as not requiring additional therapy, but he re- read the paper while preparing to present me at Tumor Board and called me last Friday to recommend the Chemo. I go to see him him this afternoon to receive my new prognosis and decide if I will go ahead with Chemo. I have read many of your posts and the neuropathology issues and Chemo brain cause me concern. I have some nerve impairment in my left leg from a herniated disc at L4-5 and from the surgery.  Still have an area of numbness on my left arm following surgery as well. He is recommending a 2 drug / wek; 3 weeks on/ 1 week off for 4-6 cycles. I have been having a really hard time warping my head around this change in direction. I was going back to work full time next week but that may all change now.

So I was just wondering if anyone had opted to not take Chemo. He does not intend to do Radiation. I probably had a history of PMB for several years before they discovered the polyps and 2 years before any intervention was done.

Any advice would be appreciated.

Kathy

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

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

 

ConnieSW's picture
ConnieSW
Posts: 543
Joined: Jun 2012

I do recall one lady talking about her decision not to have chemo.  She hasn't posted recently but I hope she is doing well.  I was more afraid of the cancer recurring (I was also 1a) so did everything recommended despite my horror at deliberately putting poison into my body.  I did well with treatment and found the fatigue to be my worst problem.  I bounced back within a couple months after I was done.  A year later I still have a small change in the sensation in my toes, although it has decreased.  As far as chemo brain, I had one awful experience after my first treatment when I couldn't count the rows in my knitting.  It passed and everything was ok after that.

Many ladies swear by alternative therapies at keeping them healthy.  Hopefully one will be along soon or you can do a content search to read what they have to say.  Good luck and let us know what you decide.  It's not an easy decision, for sure.

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

I am UPSC 1a also.  It was never an option for me.  M D Anderson in Houstion basically told that if I opted out of treatment and just had surgery, they would release me as a patience.  No discussion, no fuss, just bye,bye.  I took the six rounds of taxol/carboplatin and five rounds of internal radiation.  No side affects, except hair loss and chemo brain.  Hair grew back, brain still foggy, but it was getting foggy anyway!  I am three years clear, no reacurrance.  Best of luck!  Debrajo

NoTimeForCancer
Posts: 409
Joined: Mar 2013

Kathy, I also had UPSC Stage 1A with nothing in any lymphnodes - and they took a LOT of samples!   I had hoped I didn't have to have the chemo/radiation/chemo sandwich but because UPSC can be so agressive they recommended the treatment in the event any stray cell was hiding somewhere.

Not knowing what was going to happen with all the treatment WAS scary.  I asked if I was going to lose my hair and when the chemo nurse said yes I just cried.  I am laughing as I write this and have tears in my eyes too.  Losing my hair the first time was hard and me and my girlfriends cried when we had it shaved, but it grew and you get through it.  It is amazing what we can do!  

Since I was SO fortunate to find this devil so early (1A) I looked at my treatments as preventative treatment rather than fighting the disease.  If this was going to help me slam the door on this ***** then I was going to show just what kind of warrior I was going to be. 

I wish none of us had to go through all the chemo brain, hair loss, neuropathy.  I never thought I would make it through, but I did.  I never thought it would end, but it did.  For me, I think I have done everything I can to stop this disease in my body so I can go forth and let people know about the cancers "down there". 

I was terrified of the radiation, I never really got over that either, but I remember being told "you always have a choice.  No one is going to make you do something you don't want to do".  That is true.  We always have the right to say "no", but I wanted every chance to live to be a little, old woman.

nancibee's picture
nancibee
Posts: 48
Joined: Sep 2012

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.

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

I was diagnosed in mid 2009 with UPSC stage 1A. My local gyn/onc recommended just chemo - 6 rounds of carbo/taxol. He STRONGLY RECOMMENDED CHEMO. I think he actually did not recommend chemo but rather told me I needed to begin chemo within the next 10 days. I think that was at my post-surgery check-up a month or so after my surgery. The UPSC was not caught originally in my surgical pathology report - only when my slides were routinely reviewed later and then sent to another hospital's lab to confirm the diagnosis.

I did lots and lots of research in a very short time. I contacted all the doctors I knew (US and abroad) who were involved with any kind of cancer research and asked them to ask their colleagues what treatment they would recommend. Other doctors more invested in research recommended both chemo and internal brachytherapy to the upper vaginal vault - even for stage 1A UPSC. I had my slides sent and traveled to another state for a second opinion from a doctor directing UPSC clinical trials. He also recommended adding the brachytherapy. I returned to my local gyn/onc and requested that the brachytherapy be added to my treatment. He immediately scheduled a consultation for me with a radiological oncologist. In the end I decided to do both the chemo and vaginal brachytherapy. I had a groshong catheter surgically implanted for easy administration of the chemo. I had 3 rounds of chemo and began brachytherapy just before the 4th chemo infusion. I was able to tolerate all 6 rounds of chemo pretty well physically.

I am still being followed by a gyn/onc. I have "graduated" to check-ups every 6 months. I had some peripheral neuropathy which really started right after my chemo ended. It slowly ebbed over a couple years. The "chemo brain" has been really tough on me. I am doing lots better, but I have reluctantly resigned myself to never being as sharp as I used to be. I make lists and try to remember that I HAVE a list to look at!

I briefly considered no further treatment beyond surgery. I had lived a happy and productive life. Although my family was urging me to do further treatment, I knew the ultimate treatment decisions were mine to make. I even told them we were not taking a vote. I was gathering information but would be making my own decisions. I was about to become a grandmother. I thought I would probably live for a few more years even if I had no further treatment and had a recurrence.

Then I decided I wanted to pull out all the stops and do all I could to try to be around until my grandchild could really get to know me. I decided that even if I have a recurrence, I will know I did all I could to try to survive UPSC and be able to spend many years with my grandchild.

Good luck making your own decisions. It's not easy!

Hugs from Sally

Kdrichards
Posts: 8
Joined: Aug 2013

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

ConnieSW's picture
ConnieSW
Posts: 543
Joined: Jun 2012

Ok, one decision made and you are on your way.  Good luck.  I truly found that it went so much better than I expected.  Soon you will have it behind you and be living your precious life.

PS Good to hear from you, Kansas Gal.  We should probably do a roll call like the ovarian board ladies do.  I am still fretting about Beila.  Anyone heard anything?

EmilyL
Posts: 9
Joined: Aug 2013

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?

 

Hybridspirits's picture
Hybridspirits
Posts: 144
Joined: Nov 2012

depending on your cycle of chemo and how you are feeling you can go away.  I had a week vacation planned during chemo.  Once I told the Dr. they made sure my chemo appts were such that I would be able to go away.  When I went to Dana Farber in Boston for a second opinion the Dr.  shared the importance of doing things that are fun.  I tried to and it helped tremendoushly.    Just make sure others know of your schedules and talk about it. 

 

 

akunzel's picture
akunzel
Posts: 13
Joined: Dec 2009

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.

NoTimeForCancer
Posts: 409
Joined: Mar 2013

Great article!  I found this site late in my treatment for UPSC and only wish I had found it earlier.  The warrior women out here impress me with the knowledge, research, feedback and support.

cheerful
Posts: 115
Joined: Apr 2011

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

 

 

 

 

 

Kdrichards
Posts: 8
Joined: Aug 2013

Hi Jane,

Thank you for your advice and sharing your story. I will be having Chemo and will ask again on my next visit why he feels radiation isn't necessary. I have faith in my Gyn/ Oncologist and the Cancer Institute where I will be treated. I live near Orlando, Fl. 

I am still thinking about 4 cycles vs. 6 so if anyone has experience with that aspect I would love to hear from you.

I will keep you posted as things progress. I picked up all my pre-meds and other over the counter meds yesterday. I ordered head coverings last week as well. Going to get into work a bit over the next two weeks as I need something else other than Chemo to think about.

Take care and continued good health! 

Kathy

cheerful
Posts: 115
Joined: Apr 2011

Hi Kathy:

 

  I am so glad to hear that you have decided on having the chemo done.  As I mentioned, I only had a few side effects.  I forgot to mention in my post that I did feel a little constipated, so I took an over the counter medicine that helped - I only needed it for a day or so after a couple of days after having the chemo.

  Hopefully, you won't have much in side effects and will get through it as well as can be expected.

  With your living in Orlando, Florida, I have a first cousin who lives in Clermont, Florida which is also not far from Orlando and I do keep in contact with them.

  Anyway, I am glad that you picked up your pre-medications and your other over the counter medications already.  Glad you bought some head coverings because after a couple of weeks after your first treatment, you will need to use your head covering.

  If you work full time, you may need to cut back your time and you will lose mostly a full day with having going through chemo each time and you will need another day following just to rest up from the treatment.  Good luck with your chemo treatments and let me know how you are doing.

  Thanks also for your good wishes for my continued good health and I really appreciate it.  I just hope it continues to remain that way for the future.

Cheerful

a/k/a Jane

 

 

 

 

NoTimeForCancer
Posts: 409
Joined: Mar 2013

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! 

EmilyL
Posts: 9
Joined: Aug 2013

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.

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

I know you must be anxious.  The unknown off how you will do with the chemo is frightening.  Chemo was not nearly as bad as I had anticipated, so I hope your chemo treatments go well, too.  Glad to hear you are getting a port.  That will save your veins.  In peace and carin?

mianex's picture
mianex
Posts: 2
Joined: Sep 2013

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.

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

May I ask why chemo is not an option?  I am upsc 1a also.  I do understand age and severe health  problems {I had open heart surgery eight weeks before hysterectomy and a slew of other health problems}.  They really gave me no  choise and I also had five rounds of internal radiation plus six rounds of taxol/carboplatin.  The dr. at MD Anderson in Houston scared me so bad with the rate of aggression and rate of return of UPSC that I had the whole regiment done.   I hope your mother is well and is recovering, but have you had a second opinion about chemo?  I am a 40   month surviver.   Good luck and blessings for you mother and the whole family.  Let us know how things are going.  Best, Debrajo

angec's picture
angec
Posts: 621
Joined: Mar 2012

I am glad you chose to do treatment also!  My SIL is now 47 and she had stage 11 about 1 1/2 ago. The doctor didn't give her  any treatment at all! Said he would scan and watch.  She never told us she had cancer, so we couldn't tell her to get treatment of some kind.  It came back in September of last year. She had surgery and then she also had 4 rounds of chemo.  She had shrinkage but they weren't all gone. Then he put her on Tamoxafen because he said it was hormonal.  The met in her liver is gone and the other mets were shrinkig. Forward to two months later (last week) and now one met in her pelvis is growing. I believe she is stage 4.  I don't know what kind of Uterine cancer she has as she is very private.

She is seeing a new doctor and he immediately told her to take 6 weeks of daily radiation, then some chemo treatments.  I think the chemo will be in pill form. Does anyone know what pill treats the cancer? I have not heard of a pill form of chemo being used for uterine cancer, lest it be a new drug?

I am going to speak with my SIl tonight and try to help her out by doing research and just finding out more information. She is too scared and is not really being an advocate for herself. She just listens to the doctors, but is not an informed patient.

I am usually on the kidney boards helping my mom with her RCC.  I was so angry when i found out she was stage two and the doc did not give her any treatment. All along i kept saying it sounded wrong!  But I would encourage anyone, even stage one, to do some form of treatment. No one knows what is lurking.  It use to be that uterine cancer was rare and it was slow going. I don't know if that can be said anymore as I hear so many people have it and it can be aggressive.  

Incidentally, trying to work to eat healthier is the way to go as well. Someone sent me a link to this nutionist who has helped stage 4 patients stay NED.

http://www.namastehealthcenter.com/

http://namastehealthblog.wordpress.com/

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

I was diagnosed with UPSC stage 3-C.  I asked my doctor if I became stage 4 when the cancer went to any organs.  He said NO, I would be stage 3-C with metastasis.  So you SIL may be stage 2 with metastasis .  

A chemo pill that some others have taken is Cytoxan.  It is taken every day.   Others have taken Tamoxifen , or arimidex, or Aromasin.  These are supposed to slow the growth of the cancer.  

I am taking Aromasin.  I also had pelvic radiation asmy initial treatment.  If you knew what type of cancer she had, you could be better informed.  Sorry to hear you also have to visit thekidneyboard.  How stressful for you.  Good luck with everything.  Come back with any questions or concerns.

angec's picture
angec
Posts: 621
Joined: Mar 2012

To, thank you for information! It is very helpful! I hope to find out what kind she has. Is it possible to become NED I wonder? The pills help to slow the growth? So it doesn't really get rid of it?

I know she had a spot on her liver and possibly the tamoxifen got rid of it? Not sure. However, I will get more info and come back. You are so helpful, I appreciate it all!

Are the side affects bad on these pills? Which one is newest and the better one with positive results?

I hope you are doing well. Are you NED now or does the med just slow it for you? Prayers going out for all!

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

When I was diagnosed my doctor told me the cancer was not curable, but treatable.  So I think of it as a chronic disease.  Every  time i stop chemo my marker begins to rise.  i have been off chemo 16 months and my marker is 700.  The other times I started chemo my marker was 1500 and then 3200.  i did not have a CA 125 done prior to my surgery.  

I tried Arimidex between my second and third chemo, but it did not help.  The cancer may have been too aggressive at the time I started it.  The Aromasin was started after I finished my second chemo.  My marker has risen more slowly this time.  I had 18 months chemo free before my second chemo, but only 7 months chemo free before my third chemo.  changes in CAT scans are when I start chemo again.  Luckily my changes are just enlarged lymph nodes.  

Most peple did not experience side effects from the cytoxan.  If you type cytoxan in the subject box on the first page, you will find posts regarding cytoxan.   With the Aromasin I had lots of joint pain, but it is better now.  Everyone reacts differently to the medicines, so it is hard to say how you SIL will respond.  

Feel free to come back with any other questions you might have.  In peace and caring.

mianex's picture
mianex
Posts: 2
Joined: Sep 2013

My mom's doctor said since it was just a polyp and it hadn't invaded any tissue, chemo wasn't necessary. We're just worried.

NoTimeForCancer
Posts: 409
Joined: Mar 2013

If it is UPSC you may want to get a second opinion from a gyn/onc.  My UPSC was a polyp they found in my uterus, and while only stage 1a, they said throw the kitchen sink at it because it is the agressive kind.  I didn't want to do the "sandwich" but if it meant beating this devil then let's do it!  Lots of written works out there that show the best way to fight UPSC is with treatment, not a wait and see approach.

mianex, I sent you a private message with a link to a good article that has been on here before. 

Kdrichards
Posts: 8
Joined: Aug 2013

I originally posted the question of no Chemo because that was my initial recommendation from my gyn/onc. He decided about 4 weeks post hysterectomy to change his recommendation. As I've said in previous posts I was diagnosed at Grade 1A UPSC. July 30,2013. I had a D&C and 2 polyps removed that made the initial diagnosis. I had a history of post menopausal bleeding- possibly for 2 years before I got to my current surgeon who insisted on the D&C. My Paps where normal. I had a few non invasive cells inside the uterus at hysterectomy. All nodes, biopsies, CT and washings were clear.

Anyway after reading many helpful posts and on the updated recomendation from my doctor, I started Carbo/Taxol 3 week on 1 week off for 4-6 cycles depending on side effects. I just started cycle 2 and things are going well. I lost my hair and had it clipped off- quite liberating actually. I am working full time so far .

Since this is such an aggressive form of cancer with high recurrence rates even at lower grades, I am sure I made the right decision. I would recommend a second opinion if no treatment was recommended to be sure you have explored all the options. My doctor is not planning on Radiation but will monitor closely for local vaginal recurrence and do it then if indicated.

Thank you to everyone who shared their experiences and enlightened me about this disease. Wishing all sisters continued good health and strength to fight the good fight.

Blessing to all!

Kathy

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi Kathy, I'm UPSC also 1a.  I would question your dr. about no radiation.  One of the first places UPSC reacures is on the vaginal vault according to my dr.  I had five rounds of branchatheropy sandwiched with the six rounds of Taxol/carboplatin.   Doesnt hurt to ask!  Best Debrajo 

Kdrichards
Posts: 8
Joined: Aug 2013

I actually just had this discussion with him last week again. He says that the current research indicates they may have been too aggressive with radiation and he prefers to monitor me closely for local recurrence and treat if that occurs. The scarcely recurrence will be elsewhere in the body from cells that escaped through the Fallopian tubes. Hopefully the Chemo will take care of those. Of course there are no guarantees. For the time being I'm OK with this treatment plan but thanks for responding. Stay well!

ConnieSW's picture
ConnieSW
Posts: 543
Joined: Jun 2012

My UPSC was picked up on a pap smear.  Since those cells would have escaped the uterus, I wonder if it makes it more likely for recurrence at the vaginal cuff for me despite being 1a.  I never thought about it before but it seems logical.  I did have brachytherapy

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

My UPSC was also picked up on a routine pap.  I had five brachtherapy and questioned that much rdiation, but the dr. at MD Anderson said the Cuff was a huge recurance problem. So I went with the "whole nine yards" instead of the wait and see approach.  Besides, my dr. would not even consider no radiation because of the "C" grade.  Did you have lymph nodes checked?  I didn't and it took me years to find out why.  In their words, I had too many "co-morbities" to keep me on the table...ie they were too scard I would die on them!  Best, Debra 

 

P S I have a pap/pelvic every time I go in for a check up.  They use that and ONLY the ca125.  I have not had a scan of any type in four years.

NoTimeForCancer
Posts: 409
Joined: Mar 2013

Debrajo, I see so many women here getting scans, and other than the pre surgery CT, the CT for radiation planning, and the post treatment CT I don't have scans either.  I have always been uncomfortable with radiation (I had a super hard time wrapping my head around it all) and know it can cause more problems later.

I asked my radiologist why get this treatment since I didn't own any of the equipment anymore and he told me when they see cancer come back it is at the "pouch" at the end of the vagina that is created after the complete hysterectomy.  Oh - ok, glad I asked!

I will say for the first 3 post-treatment visits with my gyn/onc he kept telling me how it was "red" so he finally took a biopsy to make sure it wasn't anything.  It is just red from the radiation and the biopsy was nothing. 

I keep count of my CTs, and remind the doctors when they want them.  These really are not good for you, so I don't run to them.

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Glad to see someone that is getting the same basic treatment  as I am!  I was beginning to question WHY I wasn't getting a yearly scan.  Even talked to my regular MD about it and he point-blank said too many scans ups your radiation side effects and can CAUSE cancer.  My dentist even still puts the heavy no-radiation drape over me.  I also had some of the necrotic tissue from the radiation burns, but the test came back negitive...just basic scabs.  Did they test lymph nodes on you?  I haven't figured out how you get "very optimun" surgery/debunking without taking some node, but that's what my report said!  Debra 

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

Debrajo, I've had no scans either, except for the one right after my surgery and before treatment. But my doctor used to work at MD Anderson (now in private practice) and follows their protocols.

She believes I would have symptoms before cancer showed up in my scans, although I know some women here have said they have had no symptoms during a recurrence. 

At the risk of jinxing myself, I'm feeling really well........and my doctor is extremely optimistic. She told me I dodged a really big bullet.

Hugs to all the brave warriors here!! 

 

NoTimeForCancer
Posts: 409
Joined: Mar 2013

That is what the onocologist said when she looked at my report.  The surgeon took a lot of lymph node samples, in fact, when I saw the onocologist to be released to drive I asked her if my thighs were sore from being spread during surgery.  She said they weren't spread THAT far!  LOL!!  The pain in my thighs was from they lymph node removal and he took a lot!  The pain in my thighs lasted quite a few months and I had a "phantom", similar pain earlier this year.  Weird.

I did say to my gyn/onc the other day "I feel great!  What am I supposed to feel?" 

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

I JUST had the same thing happen. I wondered why I had that pain in my thigh. lol.. it still tingles a bit.

Hope all is well on your end!!

 

Hugs,

Crystal

NoTimeForCancer
Posts: 409
Joined: Mar 2013

Crystal, if you weren't told how to prevent it, look up online to see how to prevent lymphedemia.  (or ask your doctor/nurse)  No one told me and my one leg got so swollen we did an ultrasound to make sure it wasn't a blood clot.  It wasn't but then I had a month of massage and now have  a compression garment for life.  It is not the worst, and it may not have been preventable, but I would have tried to everything to avoid this too.

No one told me so I didn't know to ask. 

Hybridspirits's picture
Hybridspirits
Posts: 144
Joined: Nov 2012

I had an enormous number of pelvic lymph nodes removed and tested - 65 and 11 arota nodes.  I also have numbess on the upper thights.  almost 10 months after surgery the numbess is getting better,  Exercise helps

when i went to Dana Farber for a radiation consult the head of gynological radiology told me to definately watch out for Lympedemia.  Her words were move every day,  but more so with some good exercise that includes the legs.  She said that this would keep the circulation going and kick the lymph nodes there in gear.  I have followed this from March to today and haven't had one issue. Which is very surprising given the number of lymph nodes removed.

take care

Sharon

 

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

I have my follow up on Monday.. I have numerous questions for him.

I'm glad I saw the post about it.

I'll ask him about it..but I think I'll do my homework as well.

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