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adenocarcinoma in-situ To have Hyster or not? HELP PLEASE! adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

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  #1  
Unread 07-28-2003, 09:20 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

Help me Please Please Please someone! I have been a complete mess for the last month, crying almost everyday, not knowing if my waiting for surgery is going to kill me. I literally do not know if I'm dying or not? I have two dr. opinions each totally on different sides of the spectrum. I have the "rare" (pre)cancer Adenocarcinoma in-situ. I've been to two Doctor's one saying (GYN) have a Hysterectomy immediately the other one (Endo & cancer specialist) saying I could have a baby then have a hysterectomy. First Doctor scared the crap out of me and scheduled a hysterectomy for me 3 weeks after coposcopy (how ever you spell that thing when they do the "cone") He said I have a cancer that he has had a patient die from and that I was lucky to have caught it now because in three months from now I MIGHT not be soo lucky. The 2nd Dr. and cancer specialist said that I could be monitored closely since it is a pre-cancer and probably have gotten all out from cone and try to have a baby soon and then immediately have hyster. The 1st Dr. said his patient that had died two weeks after delivering her baby had normal paps all along (mine were supposedly normal but showing changes). 2nd Dr. says he stands behind his decision in that it is o.k. that I get pregnant as long as my next pap is normal. I do not know what to do as I really want to have a baby. (I'm 30 years old with one child (her biological father does not see her), who I desperately want to raise while she is growing up- My husband does not have any children) How can two Drs. have two such different opinions??? I want to believe the 2nd Dr. for obvious reasons, but the first Dr. has me scared to death! I do not know what to do!!! I love my daughter and husband so much I do not want to risk my life (2nd Dr. says I have an excellent chance of surviving unlike the 1st) I have a hard choice to make: Live with the fear of dying for the next year OR mourn the fact of not having anymore children for the rest of my life. Which Doctor is right????
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  #2  
Unread 07-28-2003, 09:55 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

I feel your pain and heartache. Please know you are in my thoughts and prayers. I am not in the medical field and know for myself that it was difficult to receive 2 different opinions. I had an emergency radical hysterectomy on May 9----a 15 cm tumor. My diagnosis was Stage 1a ovarian cancer--mucinous adenocarcinoma Grade 2. I am fortunate that I have 3 children and I was 49---we had our family. You are very young and very fortunate to have your child.....that is a blessing in itself. I reiterate that I am not in the medical field, but if a third opinion is necessary I would not hesitate. I received my second opinion from Dana Farber in Boston......make sure your opinion is from a highly regarded Dr. or hospital, I found my confidence because of that. Educate yourself....read as much as you can about your diagnosis. You will receive some excellent advice from this website, I found this has been a blessing in itself to me. Hang in there....one day at a time.....you will find strength you do not even know you have. Feel the warmth of my hug to you....
Julie
  #3  
Unread 07-28-2003, 11:34 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

My heart goes out to you. What a hard decision you are faced with. Julie makes some good points. Another opinion from a gyn/oncologist might give you some peace with whatever decision you ultimately make.

My thoughts and prayers are with you.


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  #4  
Unread 07-29-2003, 06:43 AM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

I would certainly go for another opinion from a gyn/oncologist - also try a search on the cancer concerns forum for Carcinoma in situ as there are many women there who have had that and they would have more information. Certainly cone biopsies are often the answer for pre-cancers to give more time to complete families etc but I don't know if this extends to when the cell changes have gone to CIS. All the fear and anxiety of the not knowing and waiting are the worst factors for everybody so read up as much as you can about this and then armed with your knowledge seek out another opinion from a gyn cancer specialist. I really feel for you as I know you're at a really frightening point in this decision but you'll get through this with some good medical advice. Huge hugs Debby
  #5  
Unread 07-29-2003, 09:31 AM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

Hi Chicka-Monkey,

I am so sorry that you are going through this right now. I can relate to your situation, mine was almost identical. I had early-stage adenocarcinoma of the cervix diagnosed when I was 31 (no kids, unsure about having them). My gyn. said I had to have a hysterectomy and referred me to a gynecologist/oncologist, who said that there was a possibility of being treated with a cone biopsy only. However, after the cone biopsy, my margins were not clear. Do you know if the margins of your cone biopsy specimen were clear? That is an important consideration.

Ultimately unsure about whether or not I wanted to have children, my gyn/onc and I decided on a procedure called a radical trachelectomy, where the cervix and some pelvic lymph nodes are removed but the uterus is left in place, leaving a chance at fertility. If during the surgery the doctor would have seen spread of cancer to my uterus (he looked at samples under a microscope), he would've performed a hyst. then and there. However, he did not and I am now past one year cancer free. Perhaps you can inquire about a trachelectomy, although it is a fairly new procedure. Send me a PM or post if you have more questions about a trach.

About adenocarcinoma in general, it is difficult to detect with a Pap Smear because the glandular cells that the abnormalities are found in are higher up in the cervix. Also, these cells apparently have a harder time sticking to the cytobrush and often are missed on a Pap. For that reason, adeno is often caught later than other types of cervix cancers and therefore was once thought to be more deadly than squamous cell cancers. However, it appears from recent research that the majority of adenocarcinomas (except for clear cell) act the same way as squamous cell carcinomas and can be treated in a similar way.

In my opinion, one reason that your decision is so difficult is because neither doctor is necessarily "right" for every person. You have to weigh the risks and benefits and choose a treatment that is right for you. There are many women who are treated with a cone biopsy alone for AIS, but there are also many on this board who had hysterectomies; you'll have to decide what's right for you based on what you've learned.

Best of luck to you, my thoughts are with you.

Beth
  #6  
Unread 07-29-2003, 11:57 AM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

Hi chicka-monkey,

I am sorry this is happeneding to you. I am going through the same situation. I was diagnosed with cervical adenocarcinoma in-situ in early July. It has been a whirlwind ever since. I was told by one oncologist that I must have a hysterectomy and another told me a cone bx would get rid of it. I had the cone bx a few weeks ago and they didn't get it all and it showed insitu and stage one cells, something like that. I don't have a copy of the report yet. Well, now I must have a radical hysterectomy and lymph nodes removed in a few weeks. I am very scared and I go through periods of being upset and other times I'm fine. I am 33 years old and just had my second boy in May. I am very happy and blessed to have them. But, I too am saddened that I can't have anymore. It seems like you want something more when someone takes it away from you. I would wait to get the results of the bx and see what it says before making a decision. Feel free to e-mail me if you want with any ?'s. I may not know all the answers b/c I am new to this whole thing too. I just wanted you to know that I completely understand and sympathize with you and you have my support
  #7  
Unread 07-29-2003, 04:49 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

I would like to thank you ladies who have replied to my post. You all have been very helpful. I have tried getting a hold of Drs. but they either aren't calling me back or I am getting their receptionist. I have faxed my information to a new Dr. today but haven't heard back from him yet. I am kind of illiterate with some of these medical terms so I'll throw some out that you have mentioned and maybe you all can help me with what they mean. My first Dr. is about to retire and I think he has lost any and all of his "bedside Manners" and is kind of nasty that I went and got a second opinion and basically told me "You got a second opinion, now YOU stay with that Dr." He hasn't explained much to me, so I learned some from the 2nd opinion Dr. but didn't think to ask some other questions, I called him and he has never called me back. I'm new to this and don't know how to get your emails, so I can ask you questions.

I don't know what stage I am. He said I have two types, one that they removed on the surface of the cervix which had clear margins. The other is pre cancer tumors that are inside the skin??

Question #1 - I had the cone thing done exactly 5 weeks ago. Do you still have pain in your stomache, like cramping sometimes? I get scared when I feel them that it's the cancer spreading!

Question#2 - In chicklet's (Beth) 3rd paragraph, she mentioned that it's hard to find out if it's gone by pap tests-which the 2nd opinion is having me do next week to see if it is normal (if it is, he said I can try for baby) Then how do I find out if it's really gone from the cone?

Question #3 - I'm quoting Beth again, " adenocarcinomas (except for clear cell) act the same way as squamous cell carcinomas and can be treated in a similar way. " What does this mean???

Question #4 - I've read up on this from the board and some people have had the baby and has been fine. BUT am I really going to hear from the people that has done this and they haven't survived? I know it's a rude type question but.....

...and Debbie I will try to search that out....I'm not sure if I know how......I'll give it a try.

THANK YOU ALL OF YOU!!!! You have made my husband and me feel better that so many of you posted when you don't even know me! We keep looking, to see if anyone else wrote to give us advise or just your hugs and prayers! THANK YOU!!!!!!

PS. LYNN- What are you going to do????
  #8  
Unread 07-29-2003, 06:29 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

Chicka-monkey,

I am definetely having the hysterectomy b/c the doctor who recommended the cone bx had not gotten the results from the cone bx and didn't know that it had spread.

As for the cramping you are having, I would let someone know. I had my cone on 8/17 and on 8/24 had terrible cramping and couldn't stand up straight or walk without a pillow on my abdomen. I was admitted to the hospital for an endometrial infection that I got from having the biopsy and had to get IV antibiotics. Now I am home on antibiotics and having a CT scan tomorrow. I don't mean to scare you, but now that I am on the antibiotics my cramping is completely gone. So I don't know if cramping is normal 5 wks out of having a cone. I wish you well and I hope you get some answers soon from a trust worthy doctor
  #9  
Unread 07-29-2003, 07:12 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

Hi Chicka...

Isn't it just awful when two doctors opinions differ so??? However, were either of these doctors and oncologist/ gynocologist???? If not, please go and get another opinion from one. They really are the experts when it comes to gynocological problems and they have all the answers.

Keep in touch.

Rosalie
  #10  
Unread 07-29-2003, 09:19 PM
adenocarcinoma in-situ To have Hyster or not? HELP PLEASE!

I was diagnosed with Adenocarcinoma in situ and the recommedation of my gyn and gyn oncologist were both hysterectomys. I have 2 children and wanted a third but they both felt that I should take the conservative option which I did. I still mourn the loss of the child that I can no longer have, but I am alive, healthy and enjoy every moment with the 2 children that I am blessed with.

I agree with the other women to get a third opinion. Good Luck.
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