Scared about recurrence

I was dx with cervical adenocarcinoma stage 1b and just went to my gyn/onc to discuss the surgery I will be having soon. I guess I misunderstood the cure rate of this. He told me there was an 80 to 90% 5 year survival rate if the lymph nodes were not involved and about 50 to 60% if they were. I thought if everything looked good after surgery and the path came back clear that you would be cured and there would be a very small chance of it coming back in the vagina. Now I am searching the net and everything I find about this seems really bad to me and that there is a much higher rate of coming back with adeno vs. squamous. I hear and read from women with this and no one has told me anything about being cancer free for more than 5 years with this stage (1b) of this particular cancer. I am definately not a gloom and doom kind of person but I am now very afraid of long term survival rates. My mom says they won't ever tell you something that would give false hope like saying you WILL be cured because Dr.s would be sued left and right. (My mom is a 12 year breast cancer survivor and nothing phases her) but I really felt a sense of despair after that Dr.s appt and I know I won't live my life in fear of it coming back but that is just how I feel right now. If anyone can calm my nerves I would be so grateful.

BEEN there!!! I know just how you feel because I felt the same way.

I was told that the cure rate for my stage 1b2, is 80%. That means that 80% of the women who were diagnosed at my stage were alive in 5 years. I was told that was true for squamous or adenocarcinoma. That's what the studies have proven. You don't need to talk with anyone, we know from the studies that those are the facts. Another fact, 80% of cervical cancer that will recur, will recur in the first two years. At two years, my doctor said my chance of recurrence went to 4%, a 96% chance of it never coming back. I'll take those odds.

After treatment, I was a total wreck about it coming back. I continued to be a wreck until close to one year. I knew that if I made it past 9 months, I was in pretty good shape. The further out we get, the less chance of recurrence. At a year, I celebrated, and relaxed a bit. At two years, I really celebrated!

Your doctor won't pronounce you "cured" until 5 years after treatment, because that's how long studies have followed women and that's the date most doctors use. Cancer can come back after that, but your odds will be very, very, small, like 1%. But two years is the big mark for us cervical cancer gals.

I am assuming that you are having a gyn oncologist do your surgery. That is the most important thing you can do to assure that it won't come back.

No one can tell you that a 80% cure rate is excellent, if you don't believe it. I remember thinking that I it was still scary because no one knows if I'll be in the 80% cured, or the 20% that is not. So the cure rate seemed meaningless to me, for a while. I realize now that 80% is a great cure rate, the odds are very good that you will be cured. I hope you will be able to see that sooner than I did.

I wish I could tell you how to not obsess on this 10 or 20% chance of a recurrence. I can't tell you how to do that because I couldn't do it. I will tell you that time is your friend. As you get further away from your treatment, the fear will lessen. Only time worked for me. Sorry. It stinks. But that was my reality. Just know that it WILL get better in time.

BIG hugs of comfort,
Janie

Oh Jane, Thank you for assuring me that in time my fears will be a fading memory. What you said is the equivilant of someone giving you a great big hug just when you need it the most. I told my friend today that if there were 100 women in a contest and 20 would be randomly chosen to win $10,000 I would never think I would be one of them but tell me I could be the one of the 20 in a 100 whose cancer comes back and somehow that is more believable to me. Go figure! I keep saying to myself even if I don't get a clear path report after the surgery, that I will still be fine. I hope I also get through those 1st 2 years with flying colors. Thanks again and wishing you many many more cancer free years to come.

The internet is a wonderful source of information except when we find stats that scare the you-know-what out of us! A few things to keep in mind with stats on the internet (passed along to me by a nursing administrator of a very prestigious hospital): By the time you and I read the stats, they are old and out of date. Also, when it comes to long term survival rates, stats are very generalized. They make no distinction between surgeries performed by general surgeons versus those performed by highly trained specialists (i.e., gyn oncologist surgeons). Finally, no matter what stats you are looking at, even if it's one where there's only a 5-10% survival rate, remember that someone has to be in that 5-10% range: Why not YOU?! (I know that does not come easy for any of us, but it's true!)

Best to you!

Hey Sharona, I was to say "ditto" to everything Janie said! Since you're having surgery, you still have treatments to fall back on. Or your doc may decide to do follow-up treatments post surgery to lessen your risk of recurrance.

Reading things on the net can be sooooo scarey, but you have to be sure to check dates on EVERYTHING you read. What was breaking info 6 months ago is old and out-dated news now. The problem with the net is that the old news isn't removed so we are left sifting through it all.

Hang in there hon, it DOES get easier to deal with. When you are first diagnosed everything is flying at you from all directions...it's a whirlwind. But as you begin to heal from surgery, get the path results back, discuss follow-up plans....your mind WILL begin to relax and you WILL learn to live without this being a constant thought.

Actually, follow up treatments to fall back on (just in case) are not an option for me since more than likely I will be having a trachelectomy to preserve my fertility.(hopefully) I don't think I can have chemo or radiation and still conceive but I guess the Dr. will do a pretty thorough check during the surgery to make sure nothing is left. Maybe that is why having a hysterectomy is a bit safer. I will have to talk to my Dr. about that. Anyway I didn't really realize about the stuff on the net being out of date so that is definately good to know and I will have to keep checking in on this site and reading how positive and courageous everyone is as it always makes me feel soooo much better. Thanks to all

Sharona, yes a trach rates do differ from a hyster's (I don't know by how much though), however it must be safe in order to be approved. Talk to your doctor about your fears. When I had surgery last year I was told there had to be near-perfect conditions for a trach as opposed to a hyster. I believe there have been changes though, as it seems more women have opted for a trach. No, you can't have treatments and preserve fertility. Both radiatin and chemo do a number on our ovaries--rarely are they spared during treatments. However, if it came to treatments to save your life oppossed to saving fertility---you have that option.

Discuss things at length with your doctor. Make sure your wishes/fears/concerns are known and understood prior to surgery.

Would the statistics be the same for Ib 2 endometrial adenocarcinoma, as for 1b 2 CERVICAL adenocarcinoma? I often wonder, because the cervix and endometrium are all part of the uterus. If not, why? I'm going for my 3 month ck.up on Monday, and will ask, but I want to hear what you know.

I'm coming up on my three year hysterversary in Dec. I wasn't even worried at the 1 yr. and 2 yr., but now I'm thinking...."wonder if some stray cells are somewhere..."

Do you every wonder if the cancerous cells in the endometrial or cervical cancer could have taken up residence in the vagina? That can happen, right? I mean, that's the obvious place that "things" trickled down toward, gravity and all that. If stray cells can be transported via blood circulation, they why don't more women have cancers spread to the vagina via cancerous cervical/endometrial cells that have no choice but to travel down there?

And I feel silly for asking this one, but it makes about as much sense. OK, then...for women with cervical or endometrial cancer, and add the "traveling cells that spread" theory to that...why don't men pick up these cancer cells in their penis, via sexual contact?

Well. At least I am thinking! It is scary to think sometimes, but I like to analyze things.

If your check ups keep coming back normal, you shouldn't be worrying about all this. You said you are coming up on your 3 year hysterversary and that is great! It is true the cancerous cells can come back some where else like in the vagina but that is why you have to keep going for tests to make sure they don't and the chances of that happening especially 3 years later are slim. From what I have heard the vagina is the area of most concern but if you keep going for paps they can pick it up quickly and get the appropriate treatments but again, odds are very good that isn't going to happen. Cancer cells are NOT contagious so no one can pick it up, anywhere, via ANY contact. Wow, I thought I worried alot : . Don't analyze too much and enjoy your good health.

HI Sharona - I don't have any specific experience but I wanted you to know that I'll keep you in my prayers and just wanted to send a