A new procedure for those of us wanting children

Hi,

I was diagnosed March '05, I am 21 and had a visible to naked eye tumor growing out of my cervix for 5 months before I was properly diagnosed. I have a rare and aggressive form of cervical cancer thought to be caused by genetics. I also have severe (CNI/3) precancer on my cervix. My actual cancer is thought to be invasive to my lympatic and vascular systems. Due to my age and the fact that I have no children and still no desire to have them (although I want them in the future) my doctor (who I must say is excellent) is offering me a new procedure. Done in only about 300 women world wide it may not be offered everywhere. My treatment is in Sacramento CA. The procedure is called a trachelectomy. It is the removal of the cervix and some surrounding tissues while leaving the uterus and ovaries intact, placing a permanent stitch where the cervix was. Childbearing is possible, miscarriage is roughly 30% this does have a higher chance of second trimester miscarriages. BUT I've been told with a high risk OB a pregnancy should be fine ending in a C-section birth.

I want all you ladies to know that just because you have cervical cancer doesn't mean your chance for carrying your own child is out of the question. It is possible! Ask around and try to find a way before you let go of your uterus.

But....despite all of this....being in the good hands of my doctor and knowing I am recieving the best of care and most advanced care, I am still scared. And angry....I feel misunderstood more than I ever have in my life. More alone than I ever have before. It makes me sad sometimes. Lately I've been feeling like the precancer could be progressing. I'm having symptoms again. I keep telling myself not to worry that when I have surgery on Nov 10th that it will all be taken care of, but it doesn't help me completely. I'm nervous about my surgery because I remember the pain of my previous surgery, I didn't recieve good pain management, and the lymph node removal worries me. I don't know what to expect from not having a cervix anymore. Is sex different? Am I going to enjoy it still? what about the swelling in my pelvic area and legs after lymph node removal b/c the lymph isn't being drained like it was before? All these questions....If any of you ladies could help me out I'd appreciate it.

Stay strong, fight hard, live long.

Lynz

Comments

  • nkern
    nkern Member Posts: 37
    I had a radical hysterectomy and lymphandectomy (31 lymph nodes) 2 years ago. I do have some swelling in legs and groin but it is manageable. I started running about a mile every morning about 3 weeks ago and I have only had one day that I actually felt pain due to the lymph node removal. Actually all the books that I have read say that finding the right excercise for you actually helps the drainage. Some people bounce lightly on a trampoline, I run. The most important thing is to find what works for you. I am so happy that you will have the alternative or at least choice to try and save your ability to have kids. I didn't have that chance due to the spread of the cancer. Once when my lymph nodes were bothering, kind of feels like your drainage system has backed up, sore tenderness around my breasts ( my lymph nodes were all removed below my belly button so who knows about that connection!). I used a diet called the "Fat Flush Plan" and it really flushed out my lymph nodes, it was the best that they had felt since surgery, kind of helped me turn the corner. The diet wasn't realistic for me to stay on but if my lymph nodes hurt bad again I would use the diet in a heartbeat. I did notice sex is a little different, not for the worst but just different.
  • xtinaw
    xtinaw Member Posts: 22
    Hi Lyndsay,

    I haven't talked to you for so long, and I was sitting here wondering how you are. We had sent a few emails via our personal email, but I changed my address a long time ago and thought I had printed out my contact list. Well, I didn't! I hope you get this and write back. [email protected]

    Christina
  • xtinaw
    xtinaw Member Posts: 22
    xtinaw said:

    Hi Lyndsay,

    I haven't talked to you for so long, and I was sitting here wondering how you are. We had sent a few emails via our personal email, but I changed my address a long time ago and thought I had printed out my contact list. Well, I didn't! I hope you get this and write back. [email protected]

    Christina

    Oh, sorry, I am so impatient and pressed "post" a million times
    Woops, I'm really not a stalker! My computer was really slow, so I pressed "post comment" a million times. Sorry!
    christina
  • Lisa0626
    Lisa0626 Member Posts: 4
    trecolectomy and after effects of not having a cervix
    hi ....i had originally had the surgery of trecolectomy but as the completed and tested the lining of my uterus they realized it was cancer so had to remove uterus and cervix.so now my chances are none unless i use my eggs and have another carry a child.but i am wondering if you had it done and how you are today.AS far as not having a cervix, or uterus- the sex is alot better for me and my orgasms are always i have no after effects other than feeling alone in my situation. i was hoping to join today and maybe feel better about what has happened....i am now cancer free 5 years!!! stage 2 cervical cancer and about 30 lymp nodes removed no side effects anymore.....
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