What do you mean I have...cervical or uterine cancer??

I turned 37 in the beginning of May of this year. Towards the middle of June I received news that I have cancer from my reg gyn. I was in shock for weeks after I heard this. I didnt know what this really meant. I have always gone in for my paps and always come back normal.

Now I should mention that this gyn is a new gyn for me because I had moved. I couldnt believe that my old gyn could have missed something but guess it can happen. Anyway the new gyn referred me to a gyn oncologist, which has been a nice source of information, but I am still thoroughly confused with what is going on. He looked over my tests (MRI, CT, Ultrasounds) and had come to conclusion that I have early stage cervical cancer and I would have to have radical hysterectomy.

So a few weeks ago I had surgery so still recovering, but he didnt do the hysterectomy. Instead he did a LEEP and D/C. Also removed some lymphnodes in which 3 came back positive. Oh and not doing the hysterectomy was his decision, eventhough I said go ahead, take everything out to be safe. He said that my uterus looked healthy with no tumors...it was just the cervix that had issues. Now this gyn oncologist had me see reg oncologist who know is telling me its endometirial/uterine cancer (poss stage 3) ......

How did it get from early stage 1 to 2 cervical to 3 endo so quickly...EXCUSE ME, but can you make up your mind please?!! ...

I am healing up now from the laprascopy and now the reg onc and gyn onc want me to go back and do the hysterectomy...I am in the process of getting a second opinion before starting chemo/radiation. Has anybody had this back and forth type of thing happen to them? I am so confused and unhappy about situation. Any info would be helpful.

By 8isenough
Posted August 12, 2008 at 1:43 pm
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I haven't been diagnosed with anything, however in looking for my own answers I have definitely heard of women getting the run around. It's not fair to say the least when I hear these women who are already at wits end with a dx of cancer, much less, when they aren't told exactly the whats and hows of their dx. I think the most important thing is taking charge of your health and standing up for yourself by asking questions and getting your information when you leave the office. Those are two things I have heard other women suggest. May I ask how they found your cancer?

By twilite
Posted August 12, 2008 at 3:46 pm
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Thank you for the response. Unfortunately women always seem to get the run around, whether it be about the car or health, and is definitely unfair when dealing with this DX. It upsets me that this DX doesnt get as much attention and is not as well known like all other cancers..something needs to change and women need to be more aware of this.

The Colposcopy is the test that showed there were cancer cells from the biospsy taken. It was done after all ultrasounds. It was an unpleasant test and if you need to get one done I suggest pain killers since they wont put you out for it....Tylenol wont help. May I ask what is going on with your health that you decided to look for answers? I hope all is well. Take care.

By 8isenough
Posted August 12, 2008 at 9:46 pm
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I posted the problems I was having after I responded to your message. I was basically a very healthy person until I was pregnant with my twins. Things started to go downhill from there. In Dec. 03 (four days after Christmas) I began to have severe abdominal pains. My dr. thought that I just had gas and suggested I drink Milk of Magnesia (i think). I tried but by the end of the day I was admitted to the hospital with wbc counts very high which at first they stated could be due just to pregnancy. It wasn't. After two days of just sitting there in pain, the new dr. on call came in to check on me and decided to do a ct scan to determine if my appendix had ruptured. It had. Basically, the size of the twins had kept the ganegrene (sp?) from seeping out and killing me. What took usually 30 minutes took 2 hrs for him to literally take out piece by piece. He said if I'd not come in, he'd given me probably 10-11 days before I would've died. It was that bad. I thought that was the end of it, but then after no bowel movement or bowel sounds, I began vomiting some really nasty stuff which led to another ct scan to find out that I had a bowel blockage which had to be resected. Finally, 3 1/2 wks later, I got to leave only to return in April to deliver the twins 7 1/2 wks early. Fortunately, they had few problems and we took them home 3 wks later. Then I had two hernia repairs (and I now have two more hernias). Jump forward a couple years and I have started bleeding so much so that, well, that's better left as it is. YUK! But you can read in my other post what all is happening. I just don't know what to do. I am confused. My husband is telling me I'm crazy for waiting and that if it was up to him, it would've come out a long time ago. (typical male, LOL) I just feel like there is this small voice telling me something is not right. I just don't know where to go. I'm tired of getting brushed off and made to think it's not really that big of a deal. It just seems weird to me that even the sonograper wasn't sure of what the mass was in my uterus and she's supposed be trained to find the most normal of all things gyn? I am so truly sorry for your ordeal. I know how hard it is for me to not know what is going on, but with a cancer dx, I would imagine I don't even know the half of what you are going through. I wish you fast answers and good luck. Thanks for responding as well. (I'm sorry this is so long, my husband says I definitely have the gift of gab.)

By Bluemoon2762
Posted August 13, 2008 at 7:16 am
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Hi Twilite,
I am so sorry that you are going through all of this. I was diagnosed with C.C. in January of this year. I too always went for my annual checkup and never had any problems prior to finding out I had cancer. Once we found out about the C.C, my OB sent me to a wonderful Gyn/Onc who first recommended a Radical Hysterectomy. On the day of surgery he said that he would need to do some invasive tests while I was out and if the cancer had not spread to the areas around the cervix, he would do the hysterectomy, and if it had, he wouldn't do the surgery. Ends up that it had spread and he wasn't able to do the surgery. He also found out that I have small cell c.c. which is more aggressive and is why we think that this showed up so quickly.
So, long story short, I didn't really get the run around, but I did get some things changed along the way.
I don't understand why they are doing what they are doing with you either. Maybe you should go for a second opinion with another gyn/onc.
Good luck to you!
Blessings,
Angie

By twilite
Posted August 13, 2008 at 10:02 pm
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Wow, I'm so sorry to hear that 8isenough. I am sure what you are feeling about this is not far off from my own feelings. It seems to me though that your problems have been going on way to long. The person doing the ultrasound will just see the mass, they wont know exactly what it is. I had the same problem with the ultrasounds. Thats why I am going thru all these other tests.

Actually I had a PET Scan done today. I freaked out, even with taking 2 anti anxiety pills lol and had to have my husband come in and sit with me so I could finish the test. This test should tell them where everything is and what to do next so I had to get thru it. Then the Dr called me today to say that he is going to have me do chemo/radiation for 5 weeks or so, then do another scan to see how the treatment helped, then simple hysterectomy. Of course this could change when PET results come back.

I really hope you find a good gyn onc because you need to find out what is going on with you. I am actually having a second opinion with another gyn onc on Friday to make sure this is the right way to go. I will let you know how that goes. Oh keep meaning to ask...Have you had any bloodtests..white blood cell high at all? Thats one of my symptoms that made me get all this stuff done too. Dont wait to long. Let me know what happens. Take care of yourself :)

By twilite
Posted August 13, 2008 at 10:21 pm
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Hi Bluemoon, thanks for your concern :) I am sorry that you have to go thru something like this also. What is the status with it now? How long ago did you diagnosed? I hope its going well with whatever treatment you are getting and very happy to hear that you at least didnt get a run around and your doctors seem more up to speed than mine. I am going for second opinion on Fri. This not knowing is very stressfull.

The back and forth reasons/explanations between the gyn onc and reg onc are getting on my nerves. I am getting extremely frustrated with them. Honestly I am thinking about having the new gyn onc (2nd opinion) do the next surgery. I dont trust really the one I have now to do it since he didnt do the radical hysterectomy. I know things change but when I go in for something and I said I wanted it done, then they dont...well not to happy to have them go in there again. Now its just the waiting game all over again to see what the next step will be and I can only wait for so long..not to mention this stuff is still in me and I need answers, cant wait till Fri :)

By 8isenough
Posted August 14, 2008 at 10:42 am
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I do now have high wbc's. They aren't passed the limit, but they are right at it. On a 4.0 to 10.5 scale mine is at 9.9. But maybe that's ok since it's not out of range. I know when I had the appendix rupture they said it was off the charts. And, again, twilite and blue moon, what is the advantage of leaving your uterus if it's diseased? And bluemoon, in your case, if its so aggressive, a lay person would think they'd try to take everything out, so I'm confused? How much longer before the PET test comes back? Good luck tomorrow twilite. I'll be praying for your peace of mind and terrific news. May I ask which state you girls are in? I am in SC. I had a friend once tell me that a dr. she knew said I need to get out of SC as far as dr.s were concerned.

By twilite
Posted August 14, 2008 at 2:56 pm
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My wbc was above 10.5 at few times and thats why I have been going to dr after dr. I even had a bone marrow biopsy done at one point to see if that would tell me something, and nothing but normal.

The gyn onc said they leave it because of treatment. The treatment will damage my ovaries, uterus, and cervix..which will in turn have side effects of course, but less damage will be done to my other organs in that area, like the bladder/kidney, from the radiation...They wont leave it in after all the treatment is over. I just wish that I was told that this could be a possibility since I said remove everything at the last appt with dr before surgery. Then he said that it stayed in because the uterus itself looked fine, meaning no tumors, and that they need the cervix (which has the cancer cells and which the scraped off) to do the internal radiation treatment. I was also told that once it goes outside the cervix/uterus it is now something different because some lymphnodes became infected.

The dr said we should know PET Scan results by this afternoon, keeping my fingers crossed that its all good and that this is the only thing I have to worry about :)

PS lol before I forget to answer this...I live in NJ

By twilite
Posted August 19, 2008 at 11:44 am
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Hi everyone..Hope all is well :) Just a little update on whats been going on. I spoke to my gyn onc about the PET Scan results. He said that it came up clear, including cervix/uterus, but I am not out of the woods yet. I still need to get treatments so have to get those started soon.

Also I got a second opinion with another gyn onc to look over my reports and speak with me, since no Dr has been able to make up minds on what I do have. Well this new gyn onc is saying it is uterine and that I should have had the hysterectomy but understands why the surgeon didnt do it. He says its because of the lymphnode involvement. It still doesnt make sense to me though to leave everything in tact just because of lymhpnodes.

Now the ball is in my court of what to do...options are treatments then hysterectomy after treatments are done or to go back in hosp (after I have been recovering for 3 weeks and almost healed) and get hysterectomy while getting treatments. Oh but still not sure how long or what dose treatments will be.

This has got to be the most frustrating decision I have ever had to deal with, surprised I am getting thru this and very glad to have found this site. Between the support from people like you, my family and husband I know I will get thru this, and still be relatively sane lol

By carrie1233p
Posted July 3, 2009 at 10:03 am
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oh boy this sounds familiar..I am 45 now, a uterine and ovarian c survivor..in 2003 had uterine so i had a partial hyst.cervix uterus out..in 2006 i had a cyst on overy, cancer.. Then he took both overys out..I shouldve had a full hyst..in 2003..Ive had a dc before and many laprospy surgerys before never had an adnormal pap in my life..i was stage 1 ca125 was 40 now its 10 and doing great i did 6 sessions of chemo for prevention and its been 3 yrs..

By twilite
Posted July 5, 2009 at 8:29 pm
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Hi Carrie,

I hope you had a Happy 4th and thanks for your reply. Its been a while since I have been on this site or that I had a response to what I wrote last year. So its much appreciated to hear from someone who has been thru similar things.

My last post was in August, so a little update is needed...

I did get that second opinion and had another surgery in Sept to get the total hysterectomy, so been dealing with hot flashes since. The second opinion was the best thing I ever did. He was a much better surgeon in my opinion, very straight forward, didnt hold anything back. I recovered from the surgery and then it was time for the treatments. They started in Oct and I finished this past May. I had 6 rounds of chemo with external radiation in between. They called it a "sandwich" effect. I went thru everything pretty well. Yes of course I lost my hair and taste, but all in all, my oncologists said they were amazed that I took it so well.

My last chemo treatment was on my bday, way to celebrate huh? lol I actually am greatful to have had it on that day, it was in my opinion, a rebirth. The day I was born was the day I finished everything to make me better :) My hair is finally coming back in, a little more grey than before, and it is such a joy to put mascara on again. Ok, I think I just took up two pages with this post so I will say fairwell for now and will keep in touch. My next checkup is July 29th so prayers and good thoughts would be appreciated :) Take care

By carrie1233p
Posted July 6, 2009 at 6:42 am
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hi twilight, I am so glad everything is going well...It seems good to hear happy news theres so much bad and negative...I'm off and on this sight somtimes it depresses me and other times i need to read other peoples posts..It's interesting..Also its good to get your mamo my mom had stage 1 breast c same time as me with the other oh yeah..We have the neg gene brac but my gyno says defintly have one every yr..oh geez just when i'm trying to forget it all butt you never do..I feel though i am a stronger person and i'm hear to tell other women about the female problems..take care..carrie

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