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Cancer was worse than originally diagnosed...A Gentle Warning Cancer was worse than originally diagnosed...A Gentle Warning

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Unread 03-16-2003, 02:51 PM
Cancer was worse than originally diagnosed...A Gentle Warning

Hi Ladies! I'm back from the castle after my 2/26 radical hysterectomy. I have an interesting end to my story which I hope will help those trying to make a decision about treatment.

I had a bad PAP and then a colposcopy which led me to have a Cold Knife Cone in December 2002. The margins of the cone came back bad and 2 local Dr.'s recommended a radical hysterectomy. I wanted to have another baby so I went to Sloan Kettering in NYC to inquire about a less radical way to treat the cancer. Sloan Kettering reviewed my pathology slides and said I DID NOT have invasive cancer but rather adenocarcinoma CIS. I was given the option to try another cone and I had another Cold Knife Cone in Jan. 2002 at Sloan Kettering. Several Dr.'s from Sloan Kettering reviewed my pathology slides from that cone biopsy and they concluded that the margins were still bad but yet again it WAS NOT invasive cancer. They offered me a slight chance of success of preserving my fertility (although I had to have a MRI to see if I had enough cervix left to even do that surgery) if I wanted to have a trachelectomy. At this point my husband and I decided the risks were too great so I chose to have a radical hysterectomy (I have 1 ovary left) in my home town.

GOOD THING I CHOSE THAT PATH!!......The pathology slides were sent back up to Sloan and my local Dr. consulted with their experts. I DID have invasive cancer which the cones did not detect. The cancer was in the cervix and in the uterine lining. The Dr. at Sloan told me he was glad I turned down their offer at a trachelectomy because my cancer was on the move. My lymph nodes are clear and I'm on the road to recovery.

I know others are deciding what treatment path to chose. I'm just glad I eventually chose the more aggressive saved my life. JILL SUE
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Unread 03-16-2003, 03:25 PM
The Right Choice!

Whew! I'm happy for you (sounds strange under the circumstances) that you made the choice for the radical hysterectomy, given what they found. I think you were being guided in the right direction by God there. I'm so happy your nodes are clear too. What followups will you have? Ellen
Unread 03-16-2003, 04:33 PM
Cancer was worse than originally diagnosed...A Gentle Warning

wow i am glad you chose that route to , how do you feel now are you recovering well, I to had a radical hysterectomy on november 4th my wedding anniversary 2002 i did have a 1 cm tumor confinded to the cervics,

this tuesday i go for my first pap test wish me luck

write back to let me know how your feeling

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Unread 03-16-2003, 04:45 PM
Cancer was worse than originally diagnosed...A Gentle Warning

Hi Ladies. Thanks for the replies. I'm meeting with my Dr. on Tuesday but while I was in the hospital he stated that I would not have to do chemo or radiation. Just checkups. Hopefully that won't change in light of the report from Sloan. Although I just now (duh) realized that this may change his original opinion. Has anyone else done chemo/radiation after a finding of cancer in the uterine lining?

I'm finally feeling better. After I came home from the hospital from the hysterectomy I got a bladder infection. I was running a high fever so they threw me back in the castle for 5 days! I have to admit that I enjoyed the rest!! I don't think I realized what a major surgery this was until I started recuperating. How long until you began to feel "normal" again? JillSue
Unread 03-16-2003, 05:16 PM
Cancer was worse than originally diagnosed...A Gentle Warning

Wow....Jill.... Glad you chose the right road..
It is truly amazing what the doctors can miss vs. what we truly believe in our hearts.
Take care.
Unread 03-16-2003, 06:57 PM
Cancer was worse than originally diagnosed...A Gentle Warning

My surgery was different so I'm not sure my opinion would matter here. But I did want to say that I'm so glad you chose the right route!

Instinct counts for so much. Pestering doctors until they find what's really wrong -- when you know something is wrong! -- is important. I am grateful that I go to Kaiser (here on the West Coast), where I can see another doctor if I want to. I've had a lot of doctors working on my case, which has really provided me with comfort.

I'm really happy you're on the road to recovery and that you made the best choice for your life. :-)
Unread 03-16-2003, 06:59 PM
Cancer was worse than originally diagnosed...A Gentle Warning

s JillSue

It is good to know you will never regret that decision!! Sometimes things just work out for the best.
It took me a good two months to recover from my radical hyster.
But we are all different. Take care and stay in touch.

Unread 03-17-2003, 09:00 AM
Cancer was worse than originally diagnosed...A Gentle Warning

Hi Jill Sue,

I am very glad that you chose to go with the radical hyst., especially in light of what the docs found! Sorry to hear that you got the bladder infection, I suffered from one of those too afterward and it was rough!

Anyway, I'm very worried by what you posted, since I had a trachelectomy. My cancer was invasive. My doctor looked at my lymph nodes and biopsied my uterus during the surgery to see if the cancer had spread. If it had, they would've done a hyst. right then and there. But according to what your doc said at MSKCC, they wouldn't have found the cancer during the trachelectomy. For obvious reasons, I'm concerned about this. Everything I've read indicates that the recurrence rate is the same for hyst. and trach. Did the doctor give you any further information, by any chance? I'm wondering if I shouldn't sign up for a hyst. today!! Thanks!

Unread 03-17-2003, 05:35 PM
Cancer was worse than originally diagnosed...A Gentle Warning

I have a similar story. After I had an abnormal pap smear, I then had a colposcopy which showed moderate to severe dysplasia. My gyn gave me the choice of waiting 3 months or having a LEEP. I chose to have the LEEP immediately. When the LEEP came back it showed Adenocarcinoma in Situ. I had the choice of a cone or a hysterectomy. Although I wanted more children, the advice of the doctors was to be more aggressive and have the hysterectomy. I too was glad that I did because the AIS had progressed to Stage 1A cancer. 16 months later I am doing fine! I am glad I chose to be more aggressive in my treatment. I know that many other ladies have had less done and are fine. I did not want to take the risk though. These are such hard choices to make.
Unread 03-17-2003, 08:42 PM
Cancer was worse than originally diagnosed...A Gentle Warning


Wow! What a surprise hearing that must have been for you. I truly believe everything happens for a reason and there sure must have been some "angel nudging" going on eh? It's a great feeling of relief once you get past that "what if" stage.

I hope you still will not require any treatments but I'm sure they're going to keep a very close eye on you.

My initial recovery went pretty good, the time frame was probably similiar to Karen's, a couple months till I was moving around well. BUT... it was more like a good six months before I truly felt like I didn't have to be that careful with what I did or what I lifted. Its so hard to tell, everyone heals at such different rates, the best bet is to just listen to what your body is telling you, it'll let you know when it needs to rest.

Let us know how it goes, we'll be sending lots of prayers your way.



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