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CIS diagnosed in Dec, hyst in March CIS diagnosed in Dec, hyst in March

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  #11  
Unread 03-01-2004, 06:40 AM
CIS diagnosed in Dec, hyst in March

Janie...

Thanks for the info. I'm sure my doc has done many of these, he had it planned from the start. But I will definitely ask him, because you've got me curious. I know the docs (rad./onc.) were thrilled at the results of chemo/radiation, but have never said anything about the tumor being gone completely. He did say the long wait time between chemo/rad and surgery was necessary because of all the healing going on, and he did mention there were a few more risks compared to the normal person that goes in for a hyst., but I can tell by the way he talks about it this is something he's done before. And my gyn. office LOVES him. Every time I mention to someone who my onc. is, they practially gush.

I've already got a list of other questions for him, so I'll add this to it, thanks.

BTW, I didn't get your email...?
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  #12  
Unread 03-01-2004, 01:40 PM
CIS diagnosed in Dec, hyst in March

Jules,
I am surprised that your gyn/onc would plan this from the beginning without knowing if the radiation and chemo would take care of the tumor. If the treatment worked, and there is no evidence of the tumor, why do this difficult surgery? I can honestly say, I've never heard of any gyn/onc who always plans a hysterectomy following radiation and chemo for cervical cancer. You should ask him if he does this for every cervical cancer patient, or if there was something about your case that made this necessary.
I suspect the later, as it doesn't make sense to prescribe this surgery if radiation and chemo do their job and I know of no gyn/onc who does this routinely. It just isn't the protocoll for treatment of cervical cancer.

It would be possible for you to have a Pap smear 3 months after your treatments ended. If your doctor does a pap, and there is no evidence of cancer, you might then ask him why you need the surgery. You could also call the rad/onc and ask how much your tumor had shrunk at the end of treatment. If he/she says it was gone, ask if it is common to have a hysterectomy when there is no longer any evidence of disease. The rad onc probably deals with other gyn/oncs, from other practices, so she would know if this is the common practice for cervical cancers. As you have seen here, on this board, it's not the standard practice to do a hysterectomy after chemo and radiation.

At a minimum, I'd get a second opinion before undergoing this tricky surgery, particulary if there is no evidence that it is medically necessary. You will have scar tissue after 4 months that will make it a rather difficult and complicated surgery. Your insurance may require a second opinion anyway since this isn't the standard protocal. How did your doctor know from the beginning that chemo and radiation wouldn't work to kill the tumor? Perhaps it's where the tumor was? Or the size? Or he suspected something else? I have no way of knowing, but you shouldn't have to have surgery without a real good reason! Get a second opinion from someone who is not affiliated with your gyn/onc 's practice.

I sent you a private message, here, at hystersisters, not an email. Sorry I wasn't clear about that.

I do hope that what I've written has not upset you. I just want to be sure that my cervical cancer sisters are getting the proper care that they need and not subjected to unnecessary, risky, procedures! Of course I do not want you to decide any medical care based on what you read here, but I do want you to be an informed patient! Doctors work for us, and they should inform us of what they are doing and why. Since your treatment plan is unusual, ask him why he's doing it this way then get a second, or even third, opinion!

BTW, what kind of cervical cancer did you have? Perhaps that might be the reason for your unusual treatment plan. Was it a rare type? Or a type that is commonly found to have spread? I'm sure your doctor had some reason for his treatment plan.

Hugs and loves,
Janie
  #13  
Unread 03-01-2004, 01:58 PM
CIS diagnosed in Dec, hyst in March

Janie...

Now you've really got me wondering! I don't know what kind of cancer it was, but I do know it was somewhat rare, or unusual was the word they used, because it was so large, bleeding so much, and had never been detected. I have a call in to my doc's office, I'll let you know what I find out.
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  #14  
Unread 03-01-2004, 02:15 PM
CIS diagnosed in Dec, hyst in March

Jules,
Glad to hear that you are calling the doctor's office.
I had very similiar circumstances. My tumor was very large, 6cm, and I had never, in 30 years, had a bad pap smear. I had my last pap in June 2003 and begin having symptoms, a clear watery discharge, in late November of 2003. I assumed it was a bacterial infection because of recently taking antibiotics. I wasn't diagnosed until April of 2004, because no one suspected it was cancer. Why would they? Yes, it bled, but all the doctors thought it was fibroid on my cervix. I had so many sonograms and tests before they sent me the gyn/onc who knew immediately what it was, despite the pap smears. It was run-of-the-mill squamous cell cancer, the very kind of cancer that pap smears are supposed to detect. I had NO risk factors, was under no stress, ate well and exercised, yet it went from nothing at all to 6 CM, in less than a year. Actually, it grew that much in about 3 months. I had a sonogram in January and it was undetectable. In April it was 6 CM! So much for cervical cancers being slow growing!

I'm glad to hear that you are taking a proactive stance! Good for you! It's your body, and you hired the doctors to treat it, so you have a right to know what they are treating and why. Kinda like our cars. We wouldn't accept just anything the mechanic told us! We wouldn't let them rip out the engine without understanding why it was necessary! :0) Ok, not a great analogy.

Have you seen your pathology reports?And your CT results? If not, ask them to send you a copy. It might help you to understand your diagnosis and treatment plan. My rad/onc showed me mine. Since my tumor grew so fast she expected it to be adenocarcinoma and was happy when it was squamous cell. Also, I saw my CT results which showed the tumor on the cervix but no spread to the lymph glands or anywhere else. Of course CT scans aren't always accurate, but it was some measure of reassurance to the doctors and to me.

Thanks for keeping us posted!
Hugs,
Janie
  #15  
Unread 03-01-2004, 04:41 PM
CIS diagnosed in Dec, hyst in March

chattylady: The two surgeries are different. The basics of removing the uterus, cervix, tubes and ovaries are the same. However, with the radical, they also remove about the upper 1/3 of the vagina and they sample different lymph nodes. As it was explained to me, the radical as my oncologist performs it at least, requires the cutting of the ureters from the kidney to access certain lymph nodes. Then, to allow the ureters to heal a catheter is in the bladder for about 4 weeks. The problem occurs when you remove the catheter because the bladder has forgotten how to empty completely. There's a period of self catheritization until the bladder empties completely. All in all, the recovery is much longer and involved.

This was a possibility since the tumor was found in the uterus, but it looked pathologically as if it might be cervical. Two pathologists called it endometrial, but the onc wanted confirmation that it was in fact not cervical. Thus the sampling of the cervix before surgery. That path confirmed that it wasn't cervical and the operation was the easier total hysterectomy.

Linda
  #16  
Unread 03-02-2004, 07:22 AM
CIS diagnosed in Dec, hyst in March

Sundance,
I guess I just had a TAH (not radical), but am having trouble making sense of my pathology report. The words used have got my head spinning. I've tried looking them up in medical dictionaries but am having trouble putting all the definitions together as they relate to me. My gyn/onc as well as my regular onc (who treated me for bc several years ago) were pleased with the results and no further treatment was recommended so I guess I shouldn't worry, but I've got an "inquiring" mind! It is presumed that the Tamoxifen which I've taken for several years in treatment of my breast cancer is what caused my current problems. If anyone could help me make sense of my report, I'd appreciate it. My pathology report read as follows:

FINAL DIAGNOSIS
Uterus, cervix, bilateral fallopian tubes and ovaries, total abdominal hysterectomy with bilateral salpingooophorectomy
endometrium -- well defferentiated adenocarcinoma (grade I/III) mucinous type, with focal superficial myometrial invasion (invading well less than 10% of the thickness of the myometrium).
Cervix/endocervix -- Squamous metaplasia with acute and chronic inflammation but no evidence of involvement by endometrial carcinoma.

The pathology report goes on to report that a cystic follicle was found on right ovary, but left ovary, tubes showed no significant abnormality. Also, lymphodes were taken from right pelvis, right obturator, left iliac, left external iliac, left hypogastric, left obturator, and Para-aortic - all of which showed no metastatic carcinoma.

I'm just concerned that no chemo or follow-up was recommended as a safe-guard because I did have a very severe hemorrhage one day which resulted in my surgery the next day. I'm just afraid that the severe bleeding may have caused cancer cells to spread. In addition to the TAH, a D&C was done so can I assume this was done to clean out any left over blood from the hemorrhage?

Also, if anyone could help me with the wording for a signature line, I'd appreciate it. My surgery was on Jan. 29th, 2004. Thanks!
  #17  
Unread 03-02-2004, 04:55 PM
CIS diagnosed in Dec, hyst in March

Chattylady: Interesting! You had the same rather rare cancer that I had. It's found in less than 1 % of the cases of endometrial cancer.

The grade I/III is not clear. It seems that some are grade 1 and some portions are grade 3. But the term well differentiated means that the cancer cells were changed slightly from normal cells. When you see the term poorly differentiated, it means that they have lost most of their normal cell character.

Since it had invaded less than 50% of the uterine wall, it would be considered a 1B stage. That is the same stage as mine. I had less than 25% invasion of the uterine wall. And all lymph nodes were clear. The other important finding was that there were no cancer cells around the cervix. Normally these cancers are found in the fundus (top part of the uterus) and then first spread into the muscle and then downward to the cervix. Then they spread to the lymph nodes and then to the rest of the body.

From what I see in what you wrote, you are at the same stage as me, 1B and the normal treatment for that is the surgery and then constant checkups. My oncologists said that if it were to recur, it would be in the upper vagina, the reason for doing the pap smears every three months.

Don't let Cancerhead get to you! Relax and trust your Dr. From what my Dr said, there is lots of data out there to say that surgery is enough for treatment at this time for me.

Linda
  #18  
Unread 03-03-2004, 08:07 AM
CIS diagnosed in Dec, hyst in March

Sundance,
Thanks so much for the info! I'm trying not to get cancerhead, but after breast cancer and now this, it's going to be hard not to panic everytime I get an unusual ache or pain. I work full-time plus have several hobbies so that helps keep my mind occupied so I don't dwell on the negative.
Bettye
  #19  
Unread 03-03-2004, 01:41 PM
CIS diagnosed in Dec, hyst in March

If cervical cancer is suspected, do doctors generally do a radical hysterectomy rather than a total? That's what I am getting from the posts here. Do they always know ahead of surgery which one they will be doing or do they decide which one based on what they find during the surgery?

Is it possible to have a RAH months or years after radiation? It seems to me that with recurrence doctors always recommend that awful extenuation surgery, where they take everything out. Why don't they just do a radical hysterectomy if cervical cancer recurrs?

Thanks all. My cancer head is slowly creeping back up on me! Down cancerhead, down!

Janie
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