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If I have a recurrence within first year - will it continue to recur?

janh_in_ontario
Posts: 109
Joined: Sep 2010

I appear to finally have an answer to the vaginal bleeding I have been experiencing for the past 7 or 8 months. Just 6 months after a TAH/BSO I started to spot/bleed and the oncologist has been unable to find what is causing the bleeding. Finally they have identified 2 masses at the vaginal cuff - believed to be a recurrence (you think?)

When I had my hysterectomy I was told I did not need any further treatment and I had a 2% chance of recurrence. He continued to tell me how surprised he would be if this bleeding was a recurrence - "your chances were so low of that" - yet here we are.

My question is this -- if it is this aggressive - and has recurred when the oncologist was so confident it would not -- does that mean I am going to be fighting this beast for the rest of my life - for however long that turns out to be? Or is there anyone on here who had a quick recurrence and has been more than 5 years since that recurrence?
I have been scouring the internet and cannot really see any articles on the number of times this comes back - or whether it just continues to recur more and more aggressively till it finally wins?

I was feeling so good about this for the first few months but when that first blood appeared I knew something was wrong. It has been like fighting Goliath to get a proper diagnosis and now I wish I had left my head dug in the sand!
Love to all
jan

Michaelynn
Posts: 67
Joined: Apr 2010

What kind of uterine cancer do you have and what stage and grade is it?

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

I'm sorry about the recurrence. I will share what my gyn-onc told me (I have uterine papillary serous carcinoma which is aggressive).

He said that the most common place for recurrence is usually vaginal cuff and that he has very high success rate in curing this - I think he said 80-90%. Mine recurred in supraclavicular lymph nodes (neck) - so much for stats.

What interests me is that your doc was surprised it recurred in vaginal cuff. There's always second opinions. I assume your doc in gyn-oncologist - if not, you need one.

I would encourage you to have confidence that this will be successfully treated. And whether you will be dealing with recurrences for rest of your life - nobody can answer that. I was told at beginning that UPSC was incurable and that I would have recurrences and treatment ongoing so none of this is a surprise to me. Cancer is unpredictable no matter the grade or stage. We can only do the best we can.

I wish you the best, Mary Ann

janh_in_ontario
Posts: 109
Joined: Sep 2010

Hi Michaelynn

It was the most common kind - endometrial adenocarcinoma. I was never given a stage - it was grade 2. The Dr was confident I had a 2% chance of recurrence - because he said there was little to no invasion.
I have had occasional bleeding since May (just 7 months after surgery) and have been given the runaround ever since. I finally insisted on a second ultrasound because i knew something was wrong.
I just finally had a CA125 test done (on my own nickel) and it is 12 - so I guess that means it is not a good marker for me.
Thanks

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Depending upon how "cure" is defined, UPSC can be, and has been, cured. Yes, it is more aggressive than the more common endometriod adenocarcinoma. However, there are many women diagnosed with UPSC who are NED 5, 10, 20, and more years after completing treatment and go on to die of something else. Studies confirm this, and each case is unique. Unless YOU are specifically told that your case has advanced so that is is "treatable, but not curable," do not give up hope of reaching permanent NED.

HellieC
Posts: 425
Joined: Nov 2010

I was also told that there is a good chance of curing recurrences at the vaginal cuff/vaginal vault, so hang on in there. They may offer you radiation therapy (either internal or external) if you haven't had it before - this seems to be the first line of therapy in most countries for this type of recurrence of endometriod adenocarcinoma.
I do hope you have a way forward soon.
Helen

Kaleena's picture
Kaleena
Posts: 997
Joined: Nov 2009

Hi Jan:

Sorry you are going through this. You never indicated whether or not you had chemo. I was diagnosed with endometrial adenocarcinoma Grade 2, stage ii/iiia after going in for a hysterectomy. Because they found it after the fact, I had to go back in for staging which they found nothing else. However, I was still treated with six rounds of chemo (Gemzar/Carbo) since I was allergic to Taxol. Then after chemo was completed had 3 HDR brachytherapies. This was a preventative measure to get any rouge cells that were too small to register on any tests. I was 45 years old when that all began back in 2005. I am now 51. My CA125 never really was a good marker for me.

I am glad you were vigilant with getting tests and such. I did the same thing.

My doctor only told me that what I had was treatable. When I was recovery from my staging surgery, my mom was in the room when the doctor was there to tell me that everything was negative/clear. So my mom said so she is cured. His reply was "I didn't say that". That is probably why he [the doctor] never wanted to remove my port.

By the way, I just had it removed in October (6 years later!)

My best to you. Sending you caring thoughts.

Kathy

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Hi Jan -
As others have said, I've also been told that these "local recurrences" have an excellent chance of a cure. It's the reason those of us with early stage, low grade endo cancer have follow-up exams. It's unlikely something will be found, but if it does, they want to catch and treat it early.

Gads, I'm so sorry you couldn't get anyone's serious attention for such a long time! Please continue to nag the heck out of whoever you have to nag and get this resolved.

Hope everything goes smoothly for you now and you're soon NED again. Please keep us posted about your progress because we worry if we don't hear.

Suzanne

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

The following is an excerpt from a recent article authored by an MD Anderson gyne-oncologist and a Stanford gyne-onc:

" Recurrences in patients treated with surgery alone tend to be more localized to the pelvis (40%), particularly at the vaginal cuff. Most recurrences (70%) are associated with symptoms of vaginal bleeding, pain, or weight loss. Asymptomatic recurrences are found by physical examination, abdominal/pelvic imaging, or chest radiography....These recurrences are usually salvageable with radiation therapy....

janh_in_ontario
Posts: 109
Joined: Sep 2010

Hi Kathy
I did not have chemo or radiation after my surgery. I have a feeling at least one of those are in my future.
Did you have a recurrence after your original chemo / radiation?
The worse part of all this stuff (so far) is the waiting. Knowing something is growing inside and waiting weeks to be even told WHEN you will have the next step in the journey is killing me.
THanks for your care... I appreciate it.

Jan

Kaleena's picture
Kaleena
Posts: 997
Joined: Nov 2009

Hi Jan:

The waiting is such a tough part of all this. When you find something out, you want to act fast but I found out sometimes it is best to gather up all your information first and then make a decision.

I finished my chemo in May of 2006 and my brachytherapy (3) in Sept of 2006. There wasn't anything after that until the possibility of a recurrence in July of 2009. This is when I did the most waiting. I changed doctors and finally had surgery in February of 2010 (the results ended up being tested negative when removed). I have only had the chemo the one time since initial diagnosis in 2005. Waiting over six months with a positive biopsy you could have imagined what I thought was growing in me!

Jan, when you take a part in all of your options and treatment and YOU make the final decision, it some how gives you this inner strength. It seems you already are making your own decisions. Here's to strength to you. Thinking the best for you.

Kathy

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

because, although unusual, there are a few things that can mimic cuff recurrance within this time frame. One of them is granulation tissue. So there will need to be a biopsy.

Second, if this proves to be a recurrance, you are likely curable still. The vaginal cuff is the most likely place for isolated recurrances after uterine cancer treatment, and the fact that you've not been radiated previously means they will be able to radiate, likely successfully, as this is a place that is pretty conducive to radiation treatment.

Best wishes to you.

Ava 52
Posts: 7
Joined: Jan 2011

I hope this posting goes on this thread yesterday I went to insist on a ct I was haveing that pelvic pain so I insisted on ct which showed three swollen lymph nodes one under kidney on under blood vessel and one i guess at vag cuff I had aednocarcinoma Stage 2 full hyst and chemo (4) and radiation is there hope for me so scared

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

Yes, there is lots of hope for you. I can feel your anxiety!!! I want to commend you for demanding the CT scan - too bad you had to do that but hurray that you got it done.

I also had lymph node metastasis and doing well after treatment which completed a year ago. I just had a scan today and will find out more next week when I see my doc.

But hang in there, you will get the right treatment and bringing any changes to your doc's attention.

Keep us posted. Mary Ann

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