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Life after Uterine Cancer

ameyc2
Posts: 4
Joined: Mar 2013

I have five years behind me since I was diagnosed and treated for clear cell uterine cancer. I was wondering if anyone was on the site or could direct me to a site that women share life after cancer issues., the dilator, the tissue bleeding from permanent radiation damage....and just share experiences in life after cancer issues?

 

Would love to hear from anyone!

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

What wonderful news to hear from a 5 year survivor.  I am so happy to hear it. 

On the first page,after you get to Uterine Cancer, you will see a Search box.  If you type a subject such as dilator into the box and click search, you will see the posts related to dilator.  I know many people have used dilators, so it has been discussed.  You can type any subject into the search box and find posts related to that subject.  You may want to check the Ovarian Boards for suggestions also. 

Again, Welcome to the site and Congratulations.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 546
Joined: Mar 2013

I wish you a 5 times 5 times 5 times 5 times 5 years survival! 

 

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

I am a five-year survivor of UPSC Stage 1a and was treated with six rounds of carbo/taxol and five brachytherapy treatments. I continue to use a dilator but stopped for a few months because my gyne-onc suggested that I could. Big mistake!

In the past, I was very involved with this message board but not so much now. If you would like to contact me, though, send a private message. I check the boards every couple of days.

Congratulations of hitting the five-year mark.

 

Jill

 

cookie24
Posts: 6
Joined: Mar 2013

I also had uterine cancer stage 1 and had carbo/taxol every 3 weeks from March to June of 2012. I have one year down 4 more to go. I also had lung cancer and had my lower right lob removed in July 2012 and did not need any treatment. My question not to sound stupid is what is a dilator?  I have to go to my surgical oncologist ever 4 months for the next 2 years.Also can you tell me what UPSC means.  thanks for the info in advance.

NorahS
Posts: 93
Joined: Dec 2012

To answer your questions: A dilator is mainly used by women who have had brachytherapy (internal radiation). A dilator keeps the tissues of the vagina stretched out enough to make sex and medical examinations comfortable.

Also there are different types of tumors in Uterine cancer - UPSC is a less common (some call it rare) type of uterine cancer tumor. UPSC stands for Uterine Papillary Serous Carcinoma (although it sometimes is abbreviated as USC or called Serous Carcinoma).

UPSC is a highly aggressive cancer even if caught at the earliest stages. If you had UPSC and yours was caught at the earliest stages (and it sounds as if that's what happened) your treatment and follow-up are standard.

You might not have had "lung" cancer in July 2012, it could have been UPSC cancer that had spread to your lung. This would be a very good question for you to ask your oncologist at your next appointment. It's important for you to know if you had 2 separate cancers, or if you had UPSC cancer that spread to your lung. 

The '5 year rule' of cancer doesn't really apply to UPSC, although if you make it to 5 years without a recurrence, you can probably relax a bit. However, you must never miss a scheduled appointment for followup.

It's also important to take care of your emotional needs after a cancer diagnosis. I urge you to find a life after cancer group in your community so that you can meet with others who are 'in the same boat' or otherwise followup with some sort of counselling.    

 

 

 

cookie24
Posts: 6
Joined: Mar 2013

Thanks for answering me. I did not have brachythersy just the chemo. I had 2 different cancers the lung cancer had nothing to do with the uterine cancer,I just got whammy twice.  Thanks for the advise been thinking about counseling but never do anything about it maybe one of these days.   

Kaleena's picture
Kaleena
Posts: 1211
Joined: Nov 2009

Ok.  I was first diagnosed in September of 2005 with Grade 2, Stage 3a Endometrial Adenocarcinoma.   Treated with Carbo/Gemzar (allergic to taxol) and then had 3 bracytherapies.  Fine until summer of 2009 wherein a recurrence was suspected.  Had surgery in February of 2010 - nothing found except a lymph node with microscopic cells - also they fixed my large hernia then too.

I have gone every 6 months for check-ups and I have had several doctors due to retirement, and in 2010 - third opinions.   My best doctor is leaving for Texas so I am now have to decide what doctor I will continue with.  Cry   They have stopped the scans due to new procedures.  I would at least get a CT scan yearly or a PET Scan, but my new insurance is hard on allowing scans of any kind.  It has been two years since my last CT scan.

 

Sometimes I feel lost like I do not know where I fit in. I am a survivor.  But I feel bad if I complain because I am NED and non-cancer family and friends don't quite understand.   They just see you as nothing wrong.   I do have to say that being NED is fantanstic.  I have done so many wonderful things since being diagnosed with cancer that I may not have done, but it hangs on the back of your mind.   I sometimes feel that I have something going on - its just a feeling - however, you cannot get scans and such on feelings.   So I just keep going on and doing stuff.  I have noticed that stress will make my mind wander, so I try to keep that down.  I hold a full time job and have two sons in college and one graduating from high school this year.   

 

So my advice - have fun and enjoy life!!!

Again, Congratulations on your five year mark!

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

That's wonderful you've attained 5 years. I don't think we have many on this board who've hit that mark. Mostly, I like to think because they've moved on. I don't see many discussions on this board about issues with radiation effects. I myself suffer from dryness and pain. It's been more than six months since I had sex with my husband because I'm affraid of the pain. I quit using my dilator as life got busier and boy am I regretting that. I was treated for stage 3C UPSC in 09 with the whole shebang. Cisplatin combined with extended field pelvic radiation/vaginal brachytherapy 3 rounds, then Taxol/Carbo 6 rounds. I recently had a very painful 6 month check up which convinced me I need to go back to dilator and ease back into sex again. My hubby has been wonderful but I know he's not happy with things as they are. I read recently that coconut oil is great to relieve the dryness and I bought some today to try. I'll let you know how it works.

 

Laura

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Congratulations on your 5 mile mark!

I'm 6 years from my first diagnosis of cancer, and almost 2 years from my diagnosis of UPSC. It does get better the farther you get from your diagnosis. My advice is to keep up with the dilator if you're not having regular sex..........maybe keep up with both. 

I use the dilator about once a week for only @ 10 minutes and am not having any problems in that dept.

Again, Congratulations and here's to putting this behind you!!

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

Any cancer has a chance of recurring after the five-year mark. However, my gyne-oncologist--an expert on UPSC at a large NYC teaching hospital--told me that at five years the risk of a UPSC recurrence is no greater in someone who has reached that milestone than it is in for people who have never had cancer at all.

 

Yes, UPSC is more agressive than Type 1 endometrial/uterine cancers; but if you have reached the five-year mark there is reason to feel pretty hopeful that you can put your diagnosis at the back of your mind.

 

Happy Passover/Easter to all who celebrate. Happy spring to everyone.

 

Jill

 

 

debrajo's picture
debrajo
Posts: 791
Joined: Sep 2011

Thanks Jill, I needed that five-year-UPCS-clear-relax a bit- boost today!  I'm34 months out of chemo from UPSC.....best, debrajo

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

Congrats!  You ladies are a breath of fresh air and bring us all hope.  I as well have a very aggressive uterine, MMMT, and am approaching my 4 yr NED mark.  I don't like to read into the statistics or what my doc tells me about my future once I get to 5 yrs, simply try to enjoy each day and think positive.

Best to everyone~

Jan

 

 

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I am happy for all of you that are NED and so jealous!

Cancer is always there. Wish I had a break.

God bless. Mary Ann

NorahS
Posts: 93
Joined: Dec 2012

...here with Mary Ann.  I very likely never will be NED, but over-the-moon happy for those that are. 

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

I probably won't ever get to dance with NED again either, and like Mary Ann, I wish we could get a break from it. 

But love to hear the joyful news when someone gets there.

Helen

NoTimeForCancer's picture
NoTimeForCancer
Posts: 546
Joined: Mar 2013

Thank you, Jill. 

One of the gynecological oncologists (G.O. - to make is simple) in the group I go to came in after my surgery and said, "This will be a blip in past for you" and I have to believe that.  My surgeon, a different G.O., gave me percentages in my follow up and I stopped listening.  

Hearing what your G.O. said is what I will focus on.  I cannot live in doom and gloom, it is not good for my soul or mental health.  I have too much to do and can't wait to do it. 

Thank you, thank you, thank you.

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