recurrence of endo

I went in to a new gyn for spotting and she was fairly sure it was vaginal thinning but sent a slide to cytology just to be thorough and yep, it came back pos for cancer cells. My lavh/bso was at the end of July. There were some malignant cells found in wash but we (2 med/oncs, tumor board) decided to watch and not do chemo/rad since they seemed to be a by-product of the orig tumor, grade 1. I started a slight discharge I think in October and saw another gyn who could get me in quickly early Nov. My regular gyn was out herself with breast cancer. He saw nothing, I healed fine, no infection, clear pap. The discharge became spotting over the next month. I brought it up again at my routine followup with med/onc and she didn't do a pelvic but sent me for a ct scan. It showed some thickening, probably healing area but should repeat in March. Now with this new development of cytology I'll have that ct this Friday. She's already talking chemo, radiation, surgery. I'm seriously scared and full of questions like:
How could it reoccur so fast? My tumor was way up top in uterus.
Should I be seeing a gyn/onc instead of med/onc?
Isn't it standard to treat with radiation rather than chemo? Med/onc is leaning to chemo but is that just their bias?
And is it true that recurrence doesn't have a good prognosis?
Finally, if anybody has spotting after they're healed from hysto, be persistent in getting the reason for it.

I would make an appointment with an experienced gyn/onc and take all my medical records with me, including the disks and reports of all CT scans. If you are not too far from a major cancer center, you might try to get an appointment with a gyn/onc there.

I agree with bronzehorse, you need to be seen by a gyno/onco. And I do not believe that a recurrence means a death sentence. There are alot of women who have had recurrence of their endo cancers and are alive and well. I have recurrence of my vaginal cancer and I was told the Cyberknife would get rid of it once and for all. There are alot of good options out there.

Thank you both. I am going to a very major cancer center (am I allowed to say which?) and had requested a referral to a gyn/onc. What they set me up with is a med/onc w/specialty in gyn malignancies. I called today and was told that at that center at least, that means she's a chemo onc. I went ahead and made an appointment with a gyn/onc there for next week.
The gyn/onc who did my surgery I didn't like and my gyn, who assisted, got breast cancer herself so became unavailable. I went to this cancer center for 2nd opinion to make sure it was the right thing to be just watching in my situation and it seemed to be. I don't blame them, they had good reasons, studies to back up the choice and I agreed. It was very unlikely to come back and adjuvent treatment wasn't shown to improve odds for just wash cells. Apparently statistics are not my friend!
I'm so glad your recurrence of vaginal cancer was cured, Ialwaysworry. I relate to your screenname. Thanks for the reassurance that there's hope.

You definitely need a gyn/onc! I've ready many stories of women who had only a gyn or med/onc who didn't get the appropriate treatment.

Chemo is a systemic treatment whereas radiation is localized. When my doc said chemo, I was completely freaked out. But after a few days of researching, I knew that he was right.

I read somewhere that if the cancer comes up again within a few months after treatment, it is not considered a recurrence, but rather it was never all gone to start with.

In an AARP magazine a few months ago, there was an article about this woman who had "chronic endo cancer." Hopefully, that won't be the case for any of us, but it is proof that recurrence does not mean death. I know how scared you are; we've all been there. You will get through this and come out a stronger person. Please keep us up to date.

Hi Pink, I had endo cancer and at my 6 week checkup following the hysterectomy it was discovered that I had the same type of cancer cells in my lower vagina/inner vulva area. I had thought the hysterectomy was going to take care of it, but in light of those new findings, I had to have a restaging surgery. I ended up having 6 rounds of chemo. I had a chemo called "cysplatin", which I was told was used as a booster for the radiation I got. I had 25 regular radiation treatments and 10 more direct radiation treatments as well as 5 internal radiation treatments.

All of my treatments were completed 2 years ago and I've been cancer free since then! I just graduated to 6 month checkups and I'm doing well. No signs of cancer!!

Don't panic. You can do this and there can be a happy ending!! I'd encourage you to see a gynecologic oncologist as they specialize in this kind of cancer. Originally I was referred to a regular oncologist who is local, but I also went to a cancer center in Seattle and have been working with a gynecologic oncologist.

The very very best of luck to you! I know you can get through this and come out ok! ,Oops! Please keep all offers of support on the boards per our site guidelines. Thanks!>

I'll be rooting for you.

Vicky

I had endo cancer in 2005 and had surgery and radiation and chemo. Line MeAndMyDog said, the radiation was specific to the pelvis and the chemo was supposed to get any stray cancer cells. In late 2007 they found a spot on my liver that they think was endo that had spread/recurred. Surgery in January 2008 and things are looking good for now.

Wow. I was away for a day (working, joining Gilda's Club support last night) and could have seen some of this good news sooner if I'd been online.
MeAndMyDog: That'd be better if it was not recurrence but left from earlier, right? I'm under the impression that recurrence is tougher to beat or indicates a more aggressive strain of cancer than they believed. But I had those stray cells left and docs couldn't explain to my understanding what they do. Die off or find a place to live.
Vin: Did they think the cancer had been in the vulva/vagina location all along or spread to there after your hystorectomy? I'm so glad to hear the treatment was not that impossible and especially that you're cancer free now.
Abeliangrape: So good the spot on your liver was taken care of! They saw spots on my liver during the last ct scan so I was sent for an ultrasound. Lucky that mine turned out to be cysts. (Scared me enough that I stopped drinking Diet Coke just in case it had caused them.) So the chemo in '05 didn't keep the endo from spreading?
I go for the repeat ct in the morning, see the med/onc in the afternoon, then the new gyn/onc next Tuesday. I'm going to try and wait until they take it to the tumor board next Thursday to decide on the plan. And I hope I can take or use that plan somewhere more convenient but just as good so I can keep my job!

I would think that it would be better if the cancer were left over and not a recurrence. But I don't know. My gyn/onc scared the heck out of me when he told me I was at high risk for recurrence. But, he's going by statistics, and it's important to remember that that's all they are, statistics. Our Hystersisters here are proof of that.

Here's an update on yesterday's visits. The ct showed the nodule had grown since Dec. I saw my med/onc and a new gyn/onc. At this cancer center the med/oncs are chemo experts, the gyn/oncs are surgeons. The med/onc discussed doing daily external rad for 5 or 6 weeks with cysplatin 1x/wk during. Then waiting a month and possibly doing more chemo with carboplatin/taxol every 3 weeks, 4x. Then I saw a gyn/onc who did a pelvic and said he could see the tumor (though the gyn's thorough exam last week could not). He wants me to have an mri so he can determine how close to bladder. Neither DH nor I could recall exactly if that's to see if he can operate at all or if it's to see whether he'd have to go in abdominally vs. some other way. I brought DH for the express purpose of listening and remembering...
Anyway, doesn't seem fair/right to have to have surgery (he did say 3 days in hospital, maybe catheter upon leaving and recovery time 2-6 weeks --no driving? How would I get radiation? work? It's harder than my hysto) plus the radiation & chemo. Can't they kill tumors with radiation? They'll bring it in front of tumor board at hospital on Thursday. There'll be a rad/onc there, hopefully promoting their abilities. I wasn't able to get into an mri at their center until Friday. May try and find an appointment elsewhere if I can and they'll accept it as good enough so the tumor board has that info to work with also.