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Cervical AdenoCarcenoma in situ Cervical AdenoCarcenoma in situ

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  #11  
Unread 03-10-2003, 06:57 PM
Oncologist report: Cone Biopsy

The Gyn/Oncologist did a pelvic exam and rectum exam on me today. I did not notice that he did a pap? For some reason, I was expecting a sonogram? Anyway, he said his recommendation was a cone biopsy. My husband was thrilled. I was hesitant. My husband wondered why I would not want to do a less invasive surgery. Well, of course I do! I just do not want to do an extra surgery and I'd like to feel comfortable that it is 100% cured! I actually was thrown off by this news since my Gyn had discussed this with me and said a hysto was necessary so the cancer did not spread to the uterus. The Gyn/Oncologist said "they" barely consider adeno carcenoma in situ cancer. Hmm. He said it was not an invasive cancer and did not spread. Of course, later, I thought, why remove it at all?

I understand that if there is a margin (no I did not ask what the margin, nor what the cone size) was clear of adenocarcenoma cells, the adeno would be considered complete and I would just continue on with paps. If not, hysto.

Next step, he'll give info to my Gyn. I'll call her to discuss and arrange. He figured I'd want the cone done by my gyn since she probably did more than he. I was disappointed that I went in with 2 pages of questions and they were not pertinent to the news. I was thrown off guard and now I have more questions. Somehow when I'm with docs I feel comorted by the news or surprised? Then I leave and drum up a number of questions. I guess that's what the phone was invented for!!

I wonder how much insurance has to do with everything.

FYI nutritional info for cancer patients and more in the book, "Smart Medicine For Healthier Living, A Practical A-to-Z Reference To Natural and Conventional Treatments For Adults" by Janet Zand, LAc, OMD, Allan N. Spreen, MD, CNC and James B. LaValle, RPH, ND.
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  #12  
Unread 03-10-2003, 10:30 PM
Cervical AdenoCarcenoma in situ

Dear Mary

I am 33 years old, and I was diagnosed with adenocarcinoma cervical cancer. I found out 2 days before Christmas. I am a stage 1B1. I think your lucky because you can have a hysterectomy. My oncologist did not feel that was the best way to go for me. I am overweight and because of that he felt that this surgery would be risky. He said that I needed a radical hysterectomy. My course of treatment has been 5 weeks of external radiation, and 4 brachytherapy treatments. I only have 2 days left of external and 2 brachytherapy treatments. Things have been OK--except for the usual side effects. I will say though that the brachytherapy is not fun. I have received really great news though--my cancer is shrinking. So I just hope and pray for the best. I will be thinking about you, and I hope that things go well.

Sincerely,
Sonja
  #13  
Unread 03-11-2003, 12:14 AM
Cervical AdenoCarcenoma in situ

MaryPA~
The good thing is that the cancer has been found. I am 33 years old and had the same thing. My DR performed a cone biopsy on my cervix and pretty much removed just about the whole thing. When my pathology came back, they found that I had a 1mm x 1mm spot in the center of the cervix that was removed, and a modified radical hyst was recommended. I did have to wait 6 weeks for the first proceedure to heal before I could have the hyst. My DR explained that because this type of cancer is fast moving and there was glandular involvement this is the prefered treatment. He removed everything but my ovaries, and sampled my lymph nodes. The final pathology came back last week and there was no cancer found in anything that was removed. Although I was worried about having the "big C", it is a big relief that it was found and removed. Hang in there, this site is great! Best if luck to you!!
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  #14  
Unread 03-11-2003, 08:48 AM
Cervical AdenoCarcenoma in situ

Hi Mary,

I am so sorry to hear that you've been stuck with "THE DECISION"...cone vs. hysterectomy. It is a very common dilemma for women on these boards, and my heart goes out to you. Just when you've adapted to a plan of action, it changes! But remember, you have to make the choice that you will be comfortable with.

The thing about doing the cone is that they will get a better idea about how much cancer is actually there and that might clarify your treatment options. BUT, I can also see why you'd just get the hyst and get it over with if you feel that's what you want in the long run.

It is not unusual for the gyn/oncologist to recommend something other than what the the gynecologist suggests. My gyn said there was no doubt that I needed a hysterectomy, but my gyn/onc thought I should have a trachelectomy.

Good luck to you, Mary! Take a deep breath and consider all of your options, I know that you will find the answer that is right for you.

Beth
  #15  
Unread 03-11-2003, 09:35 AM
Thanx, Qs, Web sites

Thank you for your input. My gut feeling is to skip the cone and do a hysto (removal of uterus and cervix). Of course, I need to do some more thinking and YES, this site and it's unique support group has helped me tremendously. Thank you ALL!

Sonja,
I'm sorry to hear about the radiation treatment. I've heard it's rough. Congratulations on the shrinking of the cancer. You're right, I am lucky to have options and have caught it at the early stage. How

Melmil,
I am glad to hear that your cancer has been removed. What a relief.
What type of cancer did you have and what stage?

I am trying to get body healthier since my mind is having trouble settling. Yoga/Meditation on the to do list!

My research hopefully will answer the following questions:
??How many people have invasive cancer without symptoms?
1. How does adenocarcinoma in situ progress or become invasive?
2. How can you detect further progressions before it comes to radiation/chemo therapy? I'd like to prevent needing these.
3. What kind of "noninvasive" tests can be done - blood, feeling lymph nodes, pelvic exam?
4. During your under anesthesia, after the cone procedure, can you get the lab reports and then do a hysto if necessary.
5. Would a lapro at the same time of the cone help?
6. What nutritional recommendations exist.
more to come...

I have some web sites other than this one that I checked into earlier in the game and am going to reinvestigate:
cancerlinks.org/cervical.html
gyncancer.com/cervix.html
yourmedicalsource.com/library/cervicalcancer/cc_treatment.html#simple
ohanlan.com/ccervix.htm
I have heard this was good, yet not been there...webmed.com

Thank you all again for your support.
Mary, 39, adenocarcenoma in situ, to cone or not to cone?
  #16  
Unread 03-11-2003, 10:06 AM
Cervical AdenoCarcenoma in situ

MaryPA~

I had Cervical Adenocarcenoma stage 1A1.
This was discovered by an abnormal pap, and then confirmed with a laparoscopy (sp?).

My Gyn. was great. She from the beginning of all of this started to prepare me with the fact that a hyst was probably going to be needed. *One of the factors in going with the hyst was that I am done having children, had I not been, both of my DR's agree that we would have stuck with the cone and watched it very carefully*

My Gyn did the cone, but after the pathology came back, I was referred to a Gyn/Onc. However, she assisted with the hyst.

I am happy with the outcome of all of the decisions that were made in my treatment, and both of the DR's are confident that I am done and there are no more cancer concers.

All the way through this I obtained copies of the pathology reports and spent many a late night researching the information.

You are facing a major health issue at this time in your life. Take a deep breath and keep asking those questions. This thing can be beat!


melmill
  #17  
Unread 03-11-2003, 11:02 AM
Cervical AdenoCarcenoma in situ

Hi Mary,

It's great that you are thinking this all through. I think I may be able to help answer some of your questions, I have spent a great deal of time researching them myself.

First, the number of people with invasive cancer with no symptoms: I can't give you an exact number but it's very high. Symptoms usually do not occur until the cancer has grown quite a bit. That is why screening through Paps is so very very important.

How does adenocarcinoma in situ progress? I'm not sure exactly what you are looking for here but "in situ" simply means "in place"; i.e. the cancer is localized to one very small layer of cells in the cervix and has not spread "wider" or "deeper". When the cancer cells begin to do those things, it is becoming invasive. The amount of invasiveness (in mm) is what determines staging for the early stages of cancer. AIS is often considered stage 0. If left alone, it will progess. If removed by surgery, it should not spread at all, except in the relatively rare circumstance of a recurrence.

How do you detect further progression? That depends on the type of treatment. If you had a cone, you would be monitored with paps and colposcopy, and these would ideally pick up recurrences the same way as they did the first time. Remember, adenocarcinoma appears to be harder to detect on paps right now! Other tests such as bone scans are not commonly done, but you can request them and insurance will cover if you're lucky! If you have a hyst., you are followed with paps, and the doc will look around during the hyst, maybe take some lymph nodes and dissect them to make sure the cancer hasn't spread.

What kind of "noninvasive tests" are used...the only ones that I know of are the pap, colposcopy, and bone scans, as well as CA125 maybe, but I don't know very much about that test. There are many at this board who can tell you much more about it.

Can you do a hyst while under anesthesia for a cone? Hmm. I'm not positive, but I think I'd have to say no here. For a cone, you really don't do much pre-op, just no eating for 12 hours and that kind of stuff. For a hyst, you need to do a full bowel prep. Plus the docs need to schedule in time for the surgery. If you only have a cone, it's like 1/2 hour max, while a hyst is significantly longer. Plus they need to have a hospital room for you after the hyst, etc.

As for the lapro, I have no idea, I'm sure someone here can help you with that. For nutritional advice, the two most common I've seen are folic acid and antioxidants in general. Don't go too high on intake though!!

One more thing to think about-there is a relatively rare side-effect of cone biopsies called cervical stenosis, which causes the cervical os to become partially or completely blocked from scarring after surgery. If this happens, it can screw up your menstruation and make it difficult to get pap smears as well. It can be very painful. Ask your doc about it. I've been experiencing it after my trach and it is no fun at all.

Hang in there Mary. This was the toughest part for me, deciding and laying awake at night waiting for an answer. Sometimes I just wished that some all-knowing authority would just tell me what the right answer was so I didn't have to think about it anymore!

Beth
  #18  
Unread 03-11-2003, 10:55 PM
change of heart or gut feelings

Thank you Beth for your vast amount of question answering!!!

After hours on the internet tonight and rereading all of your posts to my AIS call, and rethinking what the Gyn/Onc recommended, I have decided to do the cone. Now, it seems a cone can consist of the LEEP or a knife/laser surgery. I am also entertaining the idea of removing the cervix altogether (if a trachelectomy is available). Please keep in mind I am a woman and it is my DUTY to change my mind! I am also wondering if/how AIS changes into something worse? If not, why remove it at all? It's hard being an indecisive person.

From my understanding of AIS, it is non-invasive cancer, yet considered "precancer" by some and stage 0 by others and benign by some? No wonder I'm confused.

Funny, or not so, that I can be dead tired and then not be able to sleep.

Fortunately we will be going on vacation to Montana next week and have fun in the snow and cold. It's gotten really too hot here for March!

Thank you all again, I'm going to look around this site some more now.
  #19  
Unread 03-12-2003, 12:05 PM
Cervical AdenoCarcenoma in situ

Hi Mary,

I think I changed my mind about 1 million times. Believe it or not, I did not make the hyst/trach decision until the morning of the surgery!! (Not that I would recommend doing that). Doc said he was prepared to do whatever I chose. Good thing I did not choose to run screaming out of the joint.

Anyway, I wanted to comment about something that you said about AIS. It is indeed cancer, as you said, there is no doubt about it. The cancer cells will begin to multiply uncontrollably if they are not removed. Also, the cancer cells will begin to "de-differentiate", or lose their ability to do whatever their proper job is in the body. So those are some of the changes that occur during progression from AIS to later stages of cancer.

Have a great time in Montana, hope you manage some relaxation.

Beth
  #20  
Unread 03-13-2003, 05:51 AM
Gyn/Onc report of why Cone Biopsy 1st!

Todays News, I am probably going to schedule surgery for a cone biopsy with the Gyn/Onc for the end of March first of April, depending on when he is available. I considered getting a 2nd opinion, however, I believe the jury is out and strong about removing these cells via cone biopsy (My gyn said via knife so the edges would not be burnt and scewed)

Reasons I was given by Gyn (suggested by Gyn/Onc) for doing cone biopsy vs. simple hysterectomy is to have a smaller sample. The uterus sample would be much more massive and take longer to detect invasive cells, plus a greater chance to miss them. Also, if I need a hysterectomy, a simple one might not be the right treatment. If invasive cancer cells are found, depending on how invasive, I may need a radical hysterctomy.

I can see another point of view, however, the cone does not remove all cervical cells and then some could be missed. Who Knows! This discovery and question process does help me deal with the decisions at hand. I am very greatful to have online hystersisters!

Close follow up is done every 3months (PAP+ECC) for one year, then every 6 months for another year I believe. These are not easy for me (physically or emotionally) and I'm not sure if I'll just bypass them and get a hysterctomy in the summer to ease my mind and eliminate ???

Editorial goofup, change www.

I also have viewed some mdanderson.com info. I noticed there is a lot of HPV/Squamous cell cervical cancer info on the web, yet not much CIS and even smaller amount of AIS.

Until we meet again...
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