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Radical Hysterectomy with Radiation Radical Hysterectomy with Radiation

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  #1  
Unread 03-15-2004, 05:53 PM
Radical Hysterectomy with Radiation

Hi There,
I was diagnosed in Nov/03 with adenocarcinoma of the cervix Stage 1b1) and had a vaginal radical hysterectomy performed in Feb/04. I was told to go for radiation as a pre-cautionary method and I am considering declining radiation due to all the side effects - I'd really like to hear from someone who has had this treatment for a similar diagnosis?????

Katie
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  #2  
Unread 03-15-2004, 05:59 PM
Radical Hysterectomy with Radiation

Hi Katie.

I'm sorry that you're having to deal with this decision, and I've not had any experience myself in that area. But I'm sure other hystersisters will be along to give you their input and experience.

Did you consult a gynecological oncologist? They are generally considered to be the experts in gyn cancers.

All the best, and be sure to let us know how things are going for you!

Blessings.
Marlene
  #3  
Unread 03-15-2004, 06:08 PM
Radical Hysterectomy with Radiation

Hi Katie,

I did not have radiation but I did have chemo. I was given chemo to bast away any minute particles that may have been lingering.

This is my opinion.....If there were any stray particles that got away because I refused chemo or any treatment, I would never have been able to forgive myself.

If this were me, I would also get a second opinion from an oncologist/gynocologist. They are the experts in this field.

Keep us up to date.
Rosalie
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  #4  
Unread 03-15-2004, 06:41 PM
Radical Hysterectomy with Radiation

Hi Again,
Thanks for the input sisters! I wonder if I will be able to forgive myself If I make the wrong decision either way.

I have been to two gyn.oncs and I am seeing the third one on Wednesday for a second opinion. I am also seeing a natural path and homeopathic doctor - is there anyone out there who has taken alternative approaches or complementary therapies??

Katie
  #5  
Unread 03-15-2004, 06:46 PM
thoughts

Hi Katie,

I seem to have a similar diagnosis -- but for me the cancer spread to my lymph nodes.

They did a abdominal radical hysterectomy on me with pelvic lymph node dissection in Feb/04-- they took out six lymph nodes. Given the early stage of the cancer they found with the cone biopsy (Dec/03), they weren't expecting to find anything at all and said that they were just being cautious. The pathology report came back after my radical hyst. saying that the cancer had in fact spread to two lymph nodes. I was told by the radiologist/onc. that spreading at such an early stage was rare (only 3% of the time).

At this point, there is a high risk for me that other lymph nodes are also infected so I will be undergoing radiation with chemo at the same time. I was told that without treatment for me -- 60% 5 year survival rate; with treatment 85-90% 5 year survival....so I can't take chances and will definitely go ahead with treatment.

My point to giving you all of this information about me is that I wondered if they did any lymph node biopsies on you when they did your radical hyst.? In my case, if they hadn't, they wouldn't have found that the cancer had spread.

One thing that I'm aware of is a test called a PET scan. It can detect cancer in the lymph nodes. I know that they have the equipment in Toronto (where I understand you are from). The only thing I was told by my gyn/onc was that a PET is less sensitive than a surgeon's "hands" and so the cancer has to be somewhat significant to detect. My cancer wasn't visible to my surgeon and so it wouldn't have been detected with a PET scan either.

I can sympathize with you about the anxiety over the radiation. The side effects aren't too wonderful and in fact are down right scary. For me though, there is no other option.

I don't mean to give you all of this information to scare you -- because I know first hand how scary the cancer thing is to begin with. I just want to caution you on the fact that despite how low the odds are of having things spread, I'm proof that it does.

Best of luck with your decision.
  #6  
Unread 03-15-2004, 07:25 PM
Radical Hysterectomy with Radiation

Thanks for information Connie. I too had lymph node dissection but mine were negative. The surgeon recommended radiation because the cancer had spread beyond my cervix to the vaginal wall. The surgeon said that the decision to give me radiation was somewhat boderline but have decided as a pre-cautionary measure.

Good Luck with your treatment and don't worry nothing anyone says can scare me anymore than I already am!

Katie
  #7  
Unread 03-15-2004, 07:40 PM
Radical Hysterectomy with Radiation

Katie --
While I'm not delighted by the side-effects of radiation, I'm glad I didn't decline it. Like Rosalie, if any 'strays' grew I wouldn't be able to forgive myself.

My diagnosis is different than yours. Mine was endometrial cancer and had gotten to stage 2b, grade 2. We didn't think I'd have to have radiation until they actually got a look at it after surgery and found that it had gone a bit farther into the uterine wall than expected and also had edged into the cervix. I was horrified and disappointed by the recommendation for radiation, but decided to go ahead with it.

I've been fairly fortunate with the side-effects. I haven't been hit too strongly with them. When I began to have diahrrea, the doc prescribed a higher-than-the-box dosage of Imodium AD, and of course there is always the RX form of Imodium. When I experienced nausea, I got a pill to combat that, also. The fatigue isn't fun, but it's not the worst thing in the world. For me, it's all been worth it, just to know that the chances of getting this cancer again are now so slim.

I had both external and internal radiation. The type of internal radiation I had didn't require inpatient status. I hated the Foley catheter (mostly because they always had so much trouble inserting it!) and the cylindrical thing they put in my vagina to which they'd attach the cable to the radiation machine was Very Uncomfortable, but it only took about an hour from arrival to departure. The external radiation was totally "a breeze" (until I had this drainage tube inserted for other reasons, and had to lie on it...ow) -- all I had to do was to lie on my tummy in a mold they had made of my pelvis, and it only took about 10 minutes usually. A little longer when they took periodic x-rays.

I have read about natural treatments for cancer, and honestly while I'm very open to alternate therapies, I'm incredibly wary of these. I think it's because cancer is so serious and because the research isn't as extensive and well-documented as traditional Western medicine. The statistics are available for survival rates with and without post-surgical radiation. I haven't found statistics that involve post-surgical alternative therapies.

It's your body. You have the ultimate say and the absolute right to decide what to do. In my case I decided to err on the side of caution. There are scary long-term risks with radiation treatments, but for me, it's been worth that risk. Feel free to PM me if you want to talk about things more.

Wishing you all the best,
=e
  #8  
Unread 03-15-2004, 08:39 PM
Radical Hysterectomy with Radiation

Elicia,
What are the odds of being alive, 5 years out, with radiation, and without? Is it worth the odds? If it increases your chance of survival by 5% or 15% is it worth it? Only you can answer that. Ask yourself how you will feel if it comes back, if you elected not to have radiation and the extra insurance?

I had radiation, 5 weeks external and one long, 3 day, internal. At the time I had a week or so of bladder irritation and several weeks of diarhhea, off an on. That was controlled with Immodium and Lomotil. I had NO other radiation symptoms. I didn't have fatigue or any skin problems. I had chemo at the same time and by the end I did take a nap one day and didn't exercise as much, so that may count as fatigue. I am now 8 months post treatment and have no lasting effects other than bowel movements 2 or 3 times a day rather than once. Some days it's still only once a day. It gets better, closer to normal, each week. That is it. Sex is just like it always was. There's nothing else that is any different than it was pre treatment.

We only get one shot at wiping out this cancer for good. I couldn't live with myself if I didn't do everything possible to kill it, and it came back. I just couldn't do that to my family or myself. I would feel to guilty if I had passed up any chance to get rid of it. But we each have to make that decision for ourselves. Now that I am on the other side, it seems like a no brainer. Six weeks of treatment, that didn't disrupt my life, and didn't stop me from doing anything, seems like a small price to pay for a little more certainity of a cure from cancer.

Hugs,
Janie
  #9  
Unread 03-15-2004, 09:30 PM
Radical Hysterectomy with Radiation

Thanks to all of you who responded- I appreciate your candidness with me and sharing of such personal stories.

I need all the information I can get. I sure feel like I am pulling teeth to get my questions answered by the medical profession. My difficulty is that I don't even know the questions to ask sometimes until it's too late! Listening to others chat is at least helping me determine what I still do not know.

Thanks again,

Katie (A.K.A Elicia)
  #10  
Unread 03-16-2004, 03:03 AM
Radical Hysterectomy with Radiation

Katie,

While I don't share your diagnosis--I had endometrial cancer, surgical stage 1C, clinical stage 2B--I had a radical hysterectomy followed by both internal and external radiation in 1999. I had 30 lymph nodes removed and no cancer was found in the nodes. I did have a number of risk factors for recurrence for which my gynecologic oncologist said I needed the radiation.

My gyn-onc and radiation oncologist said that having the radiation decreased my chances of a recurrence from approximately 35% to about 20%. I had some short-term side effects including bladder irritation, diarrhea and tiredness midway through the five weeks of daily treatments, but have virtually no long-term side effects.

Good luck and good health to you!

MoeKay
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