Any UPSC 1a who did observation rather than chemo/radiation

Donna Faye

There appear to be so few 1a UPSC that I have been able to find in the reserch or on this board.

If you were a 1a and decided to skip treatment, please let me know. At 77, I am really wondering 

if I want to do this. 

ConnieSW

I'm one

I was diagnosed 1a UPSC after surgery in March 2012.  I completed follow up chemo and brachytherapy by October and have been NED since.   My treatment was very tolerable and I have not yet suffered any long term side effects that I am aware of.  I am 70 and doing great except for my arthritic knees.  I wouldn't dream of advising you what to do but do not regret any of my treatment.  Check out my picture.  That's me with my grandson about to go  on a bobsled ride at the Lake Placid Olympic run.  I've been busy making memories for the past 5 years.

 

Good luck to you.

Donna Faye

ConnieSW said:

I'm one

I was diagnosed 1a UPSC after surgery in March 2012.  I completed follow up chemo and brachytherapy by October and have been NED since.   My treatment was very tolerable and I have not yet suffered any long term side effects that I am aware of.  I am 70 and doing great except for my arthritic knees.  I wouldn't dream of advising you what to do but do not regret any of my treatment.  Check out my picture.  That's me with my grandson about to go  on a bobsled ride at the Lake Placid Olympic run.  I've been busy making memories for the past 5 years.

 

Good luck to you.

Thanks

This is what I am looking to hear. At 77 seems rather daunting to go through treatment and not have a few good years.

I have grandsons as well and we ride horses. Thanks so much.

DF

Hopeful162

Another one

Hi, I am also a UPSC, stage 1A survivor having had surgery in October, 2014. I was 66 at that time and chemo was recommended just to play it safe(r). Chemo was better than I anticipated, almost no nausea, just difficult bone and muscle aches on certain days, and I really didn't mind losing my hair. I still have some lymphedema issues, but that was from the lymph node removal. However, in short, I feel quite recovered and healthy and expect to be around for my full lifespan! May you enjoy the same.

Donna Faye

Hopeful162

Did you skip the radiation? Actually that is what scares me the most. So glad you are doing well. You and Connie are truly helping me make these decisions.

Hopeful162

Radiation

My oncologist discussed my case with the hospital tumor board and the consensus was chemo only, just to be on the safe side, and I learned that most oncologists are not comfortable recommending no further treatment for UPSC. I also continue to have regular "surveillance" as they call it, every three months for the first two years and then every six months for the following three. Good luck with your decisions.

Donna Faye

Radiation

Thanks so much Hopeful! I meet with the radiation onco person on the 22nd and have a son who is in the field who is going with me. He is not sure why they want to do it, so we should get good answers with his knowledge for the questions. 

Big Sister 5

UPSC

My sister is stage 1A and just had her second round of chemo. Once this is completed, her oncologist has her scheduled for radiation. She has extreeme pain around day 3 and 4 after chemo, but no vomitting. She is a trooper! I admire her and all of you experiencing this. Reading the posts on this site help me too. You give me insight on what she is going through. I pray for all of you and thank you for sharing your personal moments and suggestions.

Lynn

Nellasing

Ahh Lynn,

Sometimes people forget what the caregiver/support people go through.  It is very stressful and wearing.  Your sister is very blessed to have you helping her through this.  So glad you find this site helpful.  Please keep us posted.   (((HUGS))) and prayers

NoTimeForCancer

Donna, I think you were

Donna, I think you were asking about women a little older (I was 49 when I went through it) I was UPSC stage 1A.  I had full treatment of chemo and radiation.  As scary as it was, looking in the rearview mirror I understand the "it's doable" statement.  While there are some people who have had terrible reactions to the chemo there are good anti-nausea drugs now.  As for radiation (I had external and brachy) and I had slight diarrhea when I first started but I think the probiotics and watching my diet helped minimize it as I continued.  I lived alone, and while I have good friends, I realized that I had to do things for myself.  

Lynn, please know, none of us could make it through without the love and support without our family and friends.  My twin sister made a sign with a funny word we have in our family and would send me pictures almost every day with that sign.  No one will understand what those silly pictures meant to me - she wasn't physically with me - but she was supporting me and that meant a lot too.  

Donna Faye

Tech age support

I admit I was dragged into the tech age, but I am so glad we have this board and can touch each other from all over the US and world. Hearing from 1a's and their protocol has made me more confident that the chemo /radiation one is what offers us the best NED future. Thank you all.  And Lynn, your sister does better because of your love and support. My hope is that this type will get more attention and soon be conquered completely.  Thanks everyone!!

TracyGB

1a Survivor

Hi,  I am a 1a survivor and went through surgery, chemo and radiation.  my side affects weren't too bad.  The worst was the neuropathy and  vagina sock fused together in the back after radiation so it is very short.   Only about 2 1/2 inches.  It is hard to stretch back out without using hormone cream which I refuse to use just in case. My short sock isn't hurting anything right now And I don't want to chance getting cancer back.  With all that said I would do it again.  I was diagnosed at 46 but I don't think I would feel different at any age but that's just me.  It is a hard and very personal decision for each of us.  Good luck with whatever you decide.  I hope you will check back in after you dget code.  Tracy 

Kinableu

Ah it's great to meet so many

Ah it's great to meet so many 1As who have had good outcomes. 

During much discussion with my team it came out that the available studies of US PC are somewhat dated and flawed. USPC is relatively rare and studies have tended to include as few as 30 women with different surgeries and   If it were possible to have a group to study who have similar history and surgery the effacity if chemo external or brachytherapy can be studied properly. As it's a high malignancy cancer many people do not like to take chances -- including me-- but the evidence that chemo helps isn't that convincing To some of the more advanced thinkers studying USPC. if it's caught in Stage 1 the choices for treatment should be an individual decision depending on what a patient needs and can withstan

At my hospital which is a cancer hospital/research facility nationally famous, there were about 300 cases of all types of endometrial cancer treated, most very advanced sorry to say, and just 30 stage 1 or 2 USPC. This gives you an idea how hard it is to get answers to treatment questions.

in my own case... though I had robotic surgery and recovered well, my surgeon did the full hysterectomy after a d and c by another surgeon in a local hospital. which had apparently removed the original small tumor. The second surgeon found some endometrialfoci (colonies if you like)  but it had not spread beyond the endometrium.  Since  the original site could not be studied we decided to go for both chemo and brachytherapy, The vaginal cuff is the most likely site for a recurrence, I hear, and brachytherapy will target that area.

 

Hope me this helps and best of luck .

Big Sister 5

TracyGB said:

1a Survivor

Hi,  I am a 1a survivor and went through surgery, chemo and radiation.  my side affects weren't too bad.  The worst was the neuropathy and  vagina sock fused together in the back after radiation so it is very short.   Only about 2 1/2 inches.  It is hard to stretch back out without using hormone cream which I refuse to use just in case. My short sock isn't hurting anything right now And I don't want to chance getting cancer back.  With all that said I would do it again.  I was diagnosed at 46 but I don't think I would feel different at any age but that's just me.  It is a hard and very personal decision for each of us.  Good luck with whatever you decide.  I hope you will check back in after you dget code.  Tracy 

Sister

My sister is experiencing problems with neuropathy. She feels like her hands, and bottom of her feet are burnt. I have her use ice packs to rest her feet on, and the freezer ice packs that are soft for her hands. That seems to be the only real discomfort she has right now. I thought if anyone else is dealing with this, ice/cold packs do help.

Lynn

Nellasing

Big Sister 5 said:

Sister

My sister is experiencing problems with neuropathy. She feels like her hands, and bottom of her feet are burnt. I have her use ice packs to rest her feet on, and the freezer ice packs that are soft for her hands. That seems to be the only real discomfort she has right now. I thought if anyone else is dealing with this, ice/cold packs do help.

Lynn

Big Sister 5

just a thought- the ice is a great idea- I hope you are telling them that she is having trouble with neuropathy.  it is cumulative and may not be reversible.  in my case they reduced the taxol on the 5th treatment and ran it slower they also did that for the 6th treatment.  I also got acupuncture the day before and 1 day after each treatment.  I am taking some supplements and acupuncture still to continue to reduce the neuropathy.  (((HUGS)))

Donna Faye

Thanks all you 1a's

I begin my appt's this week to meet with the radiologist, get a port in and then meet with onc folks. Thanks to all of you, I am going to do the chemo - looks like beginning April and then, maybe ,some brachy at the cuff. It has meant so much to me to hear from those of you who have gone before. On 2/28 which was Rare Disease Day, I understood what so many folks have understood - if rare, it is not high on the research list. This site is worth its weight in gold for sure as it gives us the wind we need beneath our wings. Hugs!

sunflash

Donna, I was 57 when

Donna, I was 57 when diagnosed with UPSC  1A, 6 years ago. My doctor was adamant that I have chemo and told me she'd never recommend observation only with this type of cancer. Although not a walk in the park, chemo was much easier than I thought. 

I didn't have radiation, but I had prior radiation from cancer treatment in 2007 (unrelated to this cancer)  I think that entered into her decision although she told me she wouldn't have recommended radiation anyway. 

6 years later I have no side effects from either cancer treatment at all. 

Hope this helps in your decision.......I KNOW how difficult this is! 

Sending big hugs!

ConnieSW

Hey, Donna

Glad we helped.  The port is a great invention.  My only discomfort was from the weight of my breast tugging on the incision.  The recovery room nurse immediately helped me into my bra and that did the trick.  I made sure to immediately put it on in the am and remove it last thing before bed for a few days.  When I showered, I supported it with my arm.         

Kinableu

I am glad to hear you are

I am glad to hear you are having chemo. I have gone for my 1st chemo, 2nd brachytherapy this AM

 

i do not have a port kind of wish I did as yesterday the attempt to put an IV in my arm gave me a nice bruise.

The side affects have been hard to manage at first but you learn what works for your symptoms

Dont plan on doing a lot of your normal routine get help and rest 

The Taxol is causing some neuropathy in this cancer fighter, achy legs and ankles. A heating pad is great. I also allowed myself to get a little dehydrated. If you feel tired drink LOTS of Smart Water or any water just need loads of water  Just walk around with a water bottle and constantly sip away.  

 

good luck --  sending love!

Donna Faye

schedule set

Got my chemo schedule today! Looks like it will be an all day affair - 9A to 7P. I will get a pick line each time to save the veins in arm, then have labs, then see the doctor and finally at 2 p.m. begin the chemo. After the first chemo, will set up bracky schedule. Can't say that I am excited about this, but I will have it all done by May 18. Again, thanks to all you who take the time to send the information and good wishes. It means much to share and learn from each other. Here we go !!!!

Lou Ann M

You go girl!

now that you have a schedule, it will get a little easier.  You will be able to see that light at the end of the tunnel getting brighter and brighter.  Stay hydrated .

Hugs and prayers, Lou Ann