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Who would have thought it would be so bad? Who would have thought it would be so bad?

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Unread 05-10-2006, 07:00 PM
Who would have thought it would be so bad?

It's been a couple of weeks since I've written in with anything. I am now 3 weeks after my surgery which entailed a hysterectomy, bi lateral salpingo, and oopherectomy due to a diagnosis of endometrial cancer. They thought it was a stage one, but who would have thought the pathology would have come back so bad? It has spread to the ovary and the para aortic lymph nodes, which puts me at stage IIIC grade 2. Have been running my tush off with oncologists, radiation techs and the lot. Will begin my radiation treatments on the 22nd of this month. 5 to 6 weeks I believe, then 3 weeks internal radiaton, then chemo. I know the statistics for this stage, is there anyone else who has faced this and tackled it? Also any info on the internal radiations side effects. Would love any info at all.

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Unread 05-10-2006, 09:28 PM
Gotcha beat!

Hi, Mega,
I have the unlucky honor of having you beat. We're twins but I'm a grade 3. Lucky me... (That means mine is more aggressive than yours. Nah, nah, n... I'm joking with the sibling rivalry talk.)

Seriously, I'm a IIIc grade 3 and I do know what you're going through. My rad-onc didn't recommend chemo for me and I'm NOT trying to talk you out of it. Most of the ladies here have done the chemo. I wrestled with "Should I do chemo or not?" for weeks. I'm not a medical person so be sure you follow what your medical team recommends and not follow your "big sis" here.

Remember, it is okay to get second opinions from the medical community.

Radiation is do-able. Both internal and external.

The set-up (simulation) was daunting for me because I'm a "prude" but it was a lot easier than I thought it would be. They do a simulation for the external so they can measure where to put the beams.

Once you've had the simulation (took maybe two hours) then you're ready for your first external treatment the next day. It is easy. Five minutes usually. A bit longer when they x-ray once a week. Also might be 10-15 minutes depending on the machine's capablilities. It is painless. You lay there and the machine zaps you. No pain.

Side effects vary from person-to-person but diarrhea was a biggy for me. I thought I'd do fine with Imodium but it bothered my stomach so I lived on crackers. Saltine crackers without the salt. Bananas also helped and baked potatoes were good for me.

Eat small meals - more often. They will give you a list of foods. Drink lots of water.

Diarrhea cleared within a week of completion.

Fatigue can also / will probably happen. I usually napped for a couple of hours midday-afternoon. Seemed to hit about two hours after my treatments.

Also found if I had a shopping list that entailed more than two stores, I had to prioritize where I wanted to go. I sometimes was worn out just going to the grocery store.

I had full abdominal external. Some ladies have just had the pelvic. There is a difference and that may be why the diarrhea hit me about week 2. It cleared somewhat around week 4... I can check my notes if you want to know exactly... but then it was back for weeks 5-6 and tapered off after the last external.

My treatments were ten external then HDR #1, then ten external and HDR #2, then the third HDR after the last external rads.

Internal Radiation- I had HDR. There is another kind where you are hospitalized but with HDR you're there for 1-3 hours. The longest (2-3 hrs.) is the first simulation. My rad-onc used a lubricant with a numbing substance (Lanocaine? Not spelled correctly.) and that helped. The actual treatment is 5-15 minutes but inserting the applicator and x-raying its position makes following HDR's take an hour or hour-half.

I didn't take anti-anxiety meds for the HDRs but I have read posts here where ladies did. It wasn't as bad as I'd "conjured in my mind." I also took headphones with my favorite CD and that helped me to focus on music not the procedure.

I imagine that they are suggesting three HDRs and not three weeks of them.

I found Aquaphor worked the best for the diarrhea-sore-butt. I also found that wetting a kleenex with water was the best way to clean it. I tried a lot of commercial wipes from baby wipes to hemorroid wipes but the wet tissues - used cold water - were soothing and cleansing, too. Easily flushable.

Sunburned feeling didn't hit me until I finished. My belly still has a sunburn sting sometimes.

Feel free to private message me with questions. Also, there are several threads on Hysters if you do a search using keywords, "radiation" "HDR."

There can be long term side effects but the way it was explained to me, the benefits outway the down-the-road-possible-problems. There is one lady on Hyster who is 3c and has chosen not to have any rads or chemo but just regular check-ups.

One thing I think you should be aware of and ask your medical team about is lymphedema. Guess it depends upon how many nodes they took out. My rad-onc didn't think it will be a problem for me. (Still keeping my fingers crossed though.) It is swelling that can happen now or down the road. There is a thread here called "Lymph Nymphs" that will give you insight into it.

Hope this isn't too much information.

I wish you the best. I'm six and a half months out from surgery and finished the rads in mid-Jan. Traveled in late March with no major problems. DH took charge of the luggage, however.

You can do this. s

Best regards,
Unread 05-10-2006, 09:40 PM
Who would have thought it would be so bad?

I read some of your earlier posts about working out. Definitely think you should discuss what you can and can't do in regards to this with your medical team - if you haven't already.
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Unread 05-11-2006, 08:53 AM
Who would have thought it would be so bad?

Well - I was 3A instead of 3C but I was right about where you are. Right now I would say I have faced and tackled.

Before everything I normally worked out (kick-boxing, pilates, step aerobics, weights) about 4 times a week. (I believe) This was a large part of why things went well for me. Also - I kept going to the gym and didn't take off from work (missed an hour a day because I did radiation in the morning and took the entire day off for each chemo because it just takes that long). This is what I did because keeping to my schedule was what I needed to do to feel better. But everyone is different and needs to deal in her own way. For me, each trip to the gym, each day at work, each night out was a victory - my way of saying that I wasn't going to let this change my life.

I took 6 weeks off from the gym after surgery at the docs advice but was back at everything but Pilates (which made my nervous because it concentrates on the area I had just had operated on) at week 7. I went back to work during week 3.

I had about 6 weeks of radiation and started getting tired about 5 weeks in and slowed down on the gym - but didn't stop. It just made me feel better when I exercised.

Everything k3Cg3 said about radiation was pretty spot on. I didn't have diarrhea or a "sunburn" but I did go to the bathroom a LOT and I was very sensitive by the end. And the white stuff I had to drink for the initial radiation set up made me constipated for about 3 days.

Eat small meals - more often. They will give you a list of foods. Drink lots of water.
This is great advice for radiation and chemo.

I did chemo every 4 weeks for 4 treatments. After the 3rd treatment it was December and I was so very tired. Being busy and tired meant I gave up the gym for the last 4 weeks but I started feeling better after my last treatment.

I had bad times. But now - I have been dancing with NED since January! You are not a statistic. You are your own unique situation.

Sorry if I rambled but I just wanted to say it CAN be done.

God be with you!
Unread 05-11-2006, 09:30 AM
Who would have thought it would be so bad?

Chiming in from the IIIC endometrial sisterhood.

I can't say I've completely tackled treatment yet, but I'm on my way. The only spread my doctors know of for sure with me was 1 obturator node, but because of that, and the uncertainty of further node involvement, they recommended external radiation and 6 rounds of taxol/carbo - of which I've completed the first round. I was really up in the air about the chemo for quite a while but finally decided to go with it. All I can do is hope I made the right decision - so far so good. *knocking on wood*

As you have been told already, and will doubtless hear many more times, radiation is doable. Not fun, but doable. I had the same side-effects as Kat from it, but with added nausea because of the abdominal treatments - which I assume with definite paraaortic involvement you will have as well. Any problems you run into can be helped with meds so it's very important to keep your team informed of everything that comes up. There's never any need to suffer in silence. Now is the time in your life when you will be taking so many meds you'll feel like a walking pharmacy! I'm sorry I don't have any info for you on HDR side effects but from everything I've read around here, they're pretty much side-effect free. At least short term. Here's a link I found helpful - http://www.tirgan.com/radiation.htm
I too seem to have escaped the lymphedema, so far anyway, but it's still a fear in the back of my mind - especially since I went into this with seasonal edema issues.

As for the chemo, if you do a search for 'chemo' or the drugs you'll be treated with - which I have to assume will be taxol/carbo - you'll find a wealth of information here on the boards. Here's a link I found that walks you through the actual process. It's from the breast cancer org but I still found it to be very helpful. http://www.breastcancer.org/tre_sys_chemo_facdec.html

It certainly may not seem like it now, but time will pass fairly quickly once your treatments get started. Just don't forget to stop and breathe every once in a while. Best of luck and don't hesitate to ask questions - no matter how silly they may seem.

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