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Old 07-21-2010, 03:39 PM   #1
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New to board - just diagnosed with cancer

Hello, everyone. I'm a 51 year old woman who was just diagnosed with stage 3 rectal cancer and I'm terrified. I've always been one of those annoyingly healthy people. I didn't have a primary doctor because I didn't need one, ate healthy, exercised, and had no health problems. Then out of nowhere, boom - stage 3 rectal cancer. I'm so scared I can't breathe. The doctor said 7 weeks of daily radiation/chemo treatments, then recovery for 8 weeks, then surgery, then 3 months more chemo. He said I'll need an ileostomy, but there's enough of the lower rectum so he can reverse it after the last chemo.

The doctor was full of medical words - ostomies, radiation, chemo pumps, CT scans, etc., but he didn't say what I needed to hear, which was that I can survive this. Please let me know if I can get through all this with some quality of life intact. Can I work while I'm having the daily radiation/chemo treatments, or will I get weaker and weaker? Does the radiation do permanent damage? He said the chemo given during radiation is to increase the effects of the radiation. Does this chemo have bad side effects?

I know there are plenty of people with worse ailments, but I can't stop crying and thinking that my life is over. If those of you who've been through this difficult journey can give me some advice, I would appreciate it. I feel bodyslammed by the news and am having a really difficult time dealing with it. Thanks in advance.

 
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Old 07-22-2010, 07:18 AM   #2
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Re: New to board - just diagnosed with cancer

The following is a synopsis of info from someone that underwent radiation treatment for rectal cancer:

Radiation can 'burn' the skin - using aloe vera gel may help. Make sure that it is alcohol and dye free - alcohol being the most important factor.

Always keep in mind that radiation will (a) dry out the skin and (b) thin the skin. The two ingredients that you must be careful about are alcohol (the type that would be in a product, not necessarily drinking it - but I'm not sure that's a good idea anyway) and cortisone. If you remember, OTC acne products contained alcohol which helped to dry out oily skin - the same premise would apply here only the skin is already being dried out from the radiation treatments and doesn't need anymore 'help'. Cortisone, used for prolonged periods, has a tendency to thin the skin - again a double whammy as radiation treatments can do the same thing. Stay away from that product as well unless prescribed by a physician.

Trader Joe's has a good glycerine based soap as does Burt's Bees (although shy away from the ones with oatmeal in them - too harsh on the skin). A great place for glycerin based soaps is Bath and Body Works. You can also find a wide array of choices at most 'gift' or 'boutique' stores that carry those 'bars' or 'slices' of soap and they tend to be glycerin based.. Oil based soaps are fine but you can't use things like baby oil before having treatment or you will burn - and quite severely. (Just remember to wash thoroughly before treatments and you’ll be fine. Use the lotions/oils/creams, etc AFTER treatments and wash before the next one) Shea butter soaps are also great as long as they don't contain a lot of other ingredients, again like oatmeal.
Prior to pelvic radiation, you will get tattoos. One will be on each side of your body - not up as high as the hipbone itself, but above where the top of the thigh meets the pelvic bone and below the actual hipbone itself. Some people will get another tattoo in the general vicinity that's right above the pubic hair line and others will get it in the same vicinity only on the back side. Some people will get all four. Thus, you should protect yourself from the waist down to the top of the thighs - EVERYTHING in between. The anus is extremely important as are the tush cheeks, genital area, and particularly if there are any skin folds (like a little tummy) that needs to be protected as well. PLEASE don't assume that slathering the butt cheeks somehow protects the anus - it will not.

Remember to try to take the radiation treatments with a full bladder if possible. This will help to push the intestines out of the way of the radiation and also helps with bladder issues later on. Drinking is vital - drink a LOT and then some more. Know what foods to eat/not to eat and stick to that 'diet' during treatment religiously and for about two weeks afterwards. Only then, start slowly introducing those 'forbidden' foods back in to see how well your intestines can handle them and/or which foods will cause issues.

Take probiotics during treatment - this will help immensely with the potential diarrhea. Don't worry about taking too much. Both the chemo and radiation are doing a great job of killing all the good bacteria that the intestines need for good digestion. Eating things like yogurt alone, even Activia, tend not to give you enough probiotics - fine to eat them but also get a supplement.

The simulation is only to do some marking and possibly this - a mini CT scan with some rectal barium to further verify where the tumor is and outline it better. Each facility is different in how they accomplish this, where they tattoo the patient and in what position the patient is on the table during treatments.

If you can get RadiaGel or RadiaCream - GET IT!! Be persistent - it is fabulous and is specially made for the radiation patient. Very few centers give it out. It is now only available by Rx. Push for it as it is absolutely wonderful. Many facilities are really big on Aquaphor - many of us found it to be absolutely useless and it's messy to boot!

The radiation clinics tend to avoid telling the patient anything about what to do/not to do and truly that's a shame. Treatments can be managed if someone would only tell the patient up front and BEFORE problems start.

Vaginal adhesions/scar tissue form as a result of the radiation treatments. An estrogen based vaginal cream will help get those delicate tissues back in some sort of hormonal balance. Without it, the vagina loses its elasticity as well as dries out quite badly. Regular intercourse several times a week will be helpful in preventing adhesions that would make relations painful or not possible, which if they develop might require stretching with a dilator after the completion of treatment.

Good Luck with your treatment,
Leslie

Last edited by Administrator; 07-24-2010 at 01:41 AM.

 
Old 07-23-2010, 01:15 PM   #3
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Re: New to board - just diagnosed with cancer

Leslie, thanks so much for replying and sharing the info. This is so scary and just knowing what I'm facing makes me feel more in control.

You mentioned using lotions/oils/creams on the tush cheeks after treatment. Does this work on the anus and genital area too? Or is there another product that works better for the delicate skin in these areas, like cocoa butter?

The doctor said the beams are supposed to miss your bladder and other organs and only target the tumor, but I'm worried there will be some overlap. Did your friend have any bladder issues during treatment. I'm expecting there will be some burning, but is there incontinence?

Also, about the vagina issues...Can I use an estrogen based vaginal cream during treatment? Or would it have something in it that would increase the burn from the radiation?


Katelyn (WishJar)

Last edited by Administrator; 07-29-2010 at 08:30 PM.

 
Old 07-23-2010, 03:04 PM   #4
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Re: New to board - just diagnosed with cancer

Thanks so much, Leslie!

I'm absolutely terrified, but I think the more I know the better off I'll be going into this nightmare.

Katelyn (wishjar)

Last edited by Administrator; 07-24-2010 at 01:16 AM.

 
Old 07-23-2010, 03:10 PM   #5
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Re: New to board - just diagnosed with cancer

Leslie, just wanted to add that I hope you have a nice weekend. You were the only one that posted to my message and I wanted to say I appreciated it! Thank you!

Katelyn (wishjar)

 
Old 07-24-2010, 09:17 AM   #6
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Re: New to board - just diagnosed with cancer

You WILL make it through this. Yes, there will be difficult days but you'll get past them and they'll become a distant memory some day for you. It is important to hydrate yourself first of all. My rad. onc. never told me what to use but I received info. from the friend Leslie was speaking about for which products to use. I did get permission from my rad/onc. and you should do the same. For me what worked best was Johnson's and Johnson's 24 hr. Moisture. I would slather that on after my radiation treatment and alternate throughout the evening (after each was absorbed) with aloe (no alcohol) and coco butter. Make sure ALL of it is washed off prior to your treatment the next morning. It's also good to get a soap that doesn't have alcohol or any drying effects. Perhaps a perfume free glycerin soap.
You should have been told to drink a certain amount of water prior to arriving for your treatment, that will place your bladder away from radiation beam. I didn't have trouble at the beginning of radiation but by the end of the 7 wks it was hard to hold it but really that was the only problem with the bladder.
You may think your going to get away without having any anal burning but radiation is cumulative and it may not hit you until your almost done with treatments. It will continue for a couple of weeks after. I thought it would never get better and then I woke up one morning and it was completely gone.
Chemo can have some effects. If your on the pump like I was (5FU/leucovorin) I had mouth sore and some nausea. My onc. decreased my dose slightly and that took care of the mouth sores. The nausea I controlled with compazine which is an antinausea drug. There is also a pill form of 5FU called Xeloda. If you are getting that let me know and I'll give you more info. I've been on Xeloda for 17 months straight now and tolerate it fairly well.
There is life with this Katelyn, it will be different but there is life. It was hard for all of us at first, this is very scarey, it will get better and you'll come to terms with it.

God Bless!
Terry

Last edited by Administrator; 07-29-2010 at 08:31 PM.

 
Old 07-24-2010, 02:26 PM   #7
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Re: New to board - just diagnosed with cancer

42/M. I finished 6 weeks chemo / rad 3 weeks ago, now waiting on MRI to see what the effect was before surgery for my T3 rectal tumor. Had the pump w/ 5FU without a hicky, thank goodness (never was sick nor lost a lb or a hair), but did start getting some radiation burn in the butt-crack around week 5. They gave me "Aquaphor" ointment which was a bit greasy but worked very well.
Hope this helps. Chat anytime you like....

 
Old 07-28-2010, 11:03 AM   #8
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Re: New to board - just diagnosed with cancer

Thanks from the bottom of my heart for your response

Did you put on the J&J lotion right after the rad. session (before you got home, while you were still at the rad. onc. place)?

Did you use J&J on your anal area? Or something different for that?

Did you have to wear lose clothing so it wouldn't irritate the area being radiated?

Did you ask your rad. onc. for a prescription for an estrogen based vaginal cream to handle the effects in that area?

I have my initial consult with the rad. onc. and chemo onc. next week. Are there any questions I should ask them?

Sorry for all the questions.

Hugs to you,
Katelyn (wishjar)

Last edited by Administrator; 07-29-2010 at 08:32 PM.

 
Old 07-28-2010, 12:03 PM   #9
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Re: New to board - just diagnosed with cancer

Hi, stexcanuck,

Thanks for your response! I really appreciate the advice!

Did you choose the pump over weekly IV infusion? Was the pump hard to live with? Where did they place the central line? Was it obvious to others? What about showering, etc.

Did you have any numbness in your hands or feet? I hear that's a common side effect of 5FU.

How long will you wait for the surgery? My doc said the radiation continues to work for a few weeks so it's best to delay for awhile. I'm just starting down the same path as you so I really appreciate your help and advice!

Katelyn (wishjar)


Quote:
Originally Posted by stexcanuck View Post
42/M. I finished 6 weeks chemo / rad 3 weeks ago, now waiting on MRI to see what the effect was before surgery for my T3 rectal tumor. Had the pump w/ 5FU without a hicky, thank goodness (never was sick nor lost a lb or a hair), but did start getting some radiation burn in the butt-crack around week 5. They gave me "Aquaphor" ointment which was a bit greasy but worked very well.
Hope this helps. Chat anytime you like....

 
Old 07-28-2010, 05:24 PM   #10
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Re: New to board - just diagnosed with cancer

Pump was recommended so I did it.....had a port installed on upper rt side of chest....its noticable but not bad to live with. Pump was a nuicance but thats all (24/7 for 6 weeks) wearing on belt or off a shouler strap....its about 1" thk x 5" wide x 8" tall....showering I set it outside and ran the line over the top...make sure you have some replacement tegaderms. My doc says about 8-10 weeks after Chemo/rad for surgery. I am trying to get a darn MRI set up .... surgeon is 4 hours up the road and his staff really starting to aggravate me, but docs down here want open abdomen and this guy will do lapro and gives me a higher chance of reconnection as well, so we'll behave . No numbness or anything in hands/feet, no side effects at all except week 5 when I started getting some bum-burn, but as stated that was very manageable. Radiation will do a number on you for a BM (or fart, lol)...my tumor is "mobile" vs. tight to the rectal wall and once it had 5 weeks of radiation, gas would light me up as it went by! But that was the worst of it. They will tell you to work up the immodium, but don't go overboard, cause you can bung up and get in a real fix.

 
Old 07-30-2010, 05:25 AM   #11
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Re: New to board - just diagnosed with cancer

Katelyn

I just want to reiterate that proper care during radiation is very important. Put the J&J on the anal area when you get home after your treatment and keep putting it on as it dries up but WASH it all off before next treatment.

No, you don't have to wear loose clothes, just wear whatever is comfortable.

It probably is a good idea to get some type of vaginal cream. There are vaginal issues that do arise after radiation treatment. Thus it is important that in addition to using cream, you keep the area active and intercourse two or three times a week will avoid the necessity of needing to use dilators later on to stretch the area and prevent internal vaginal adhesions from developing.

Hope your treatment goes well,
Leslie

 
Old 07-30-2010, 11:52 AM   #12
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Re: New to board - just diagnosed with cancer

Thanks, again, Leslie. Your advice means so much to me.

You guys are the best!
Katelyn (wishjar)

Last edited by moderator2; 07-30-2010 at 05:39 PM.

 
Old 07-30-2010, 12:07 PM   #13
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Re: New to board - just diagnosed with cancer

Hi, stexcanuck,

The pump sounds big! How often did you have to go in to have it refilled? Did they close up the port now that you are finished with rad/chemo? Or leave it open for more chemo after the surgery? I'm really freaked out by the idea of a port under my skin.

I'm glad you found a surgeon who gives you a higher chance of reconnection. My guy won't do lapro either, but he said I can be reconnected so I guess I can live with the big scar.

A few more questions: Was there ever a time you felt too tired to drive in/back from radiation? I'll have a 1 and 1/2 hour drive each way. I don't want to fall asleep at the wheel! lol And about the gas...did you use Gax-X or anything like that?

You are one step ahead of me in the process so I appreciate hearing from you!

Katelyn (wishjar)

Quote:
Originally Posted by stexcanuck View Post
Pump was recommended so I did it.....had a port installed on upper rt side of chest....its noticable but not bad to live with. Pump was a nuicance but thats all (24/7 for 6 weeks) wearing on belt or off a shouler strap....its about 1" thk x 5" wide x 8" tall....showering I set it outside and ran the line over the top...make sure you have some replacement tegaderms. My doc says about 8-10 weeks after Chemo/rad for surgery. I am trying to get a darn MRI set up .... surgeon is 4 hours up the road and his staff really starting to aggravate me, but docs down here want open abdomen and this guy will do lapro and gives me a higher chance of reconnection as well, so we'll behave . No numbness or anything in hands/feet, no side effects at all except week 5 when I started getting some bum-burn, but as stated that was very manageable. Radiation will do a number on you for a BM (or fart, lol)...my tumor is "mobile" vs. tight to the rectal wall and once it had 5 weeks of radiation, gas would light me up as it went by! But that was the worst of it. They will tell you to work up the immodium, but don't go overboard, cause you can bung up and get in a real fix.

 
Old 07-30-2010, 02:27 PM   #14
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Re: New to board - just diagnosed with cancer

Thanks for the info, Leslie. I'll just keep asking questions here. I really appreciate everyone's advice. It can feel pretty darn scary and lonely at times.

Katelyn (wishjar)

Last edited by moderator2; 07-30-2010 at 05:47 PM.

 
Old 07-30-2010, 04:00 PM   #15
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Re: New to board - just diagnosed with cancer

pump was an nconvenience but not that bad.....I'd go in once a week to have it swapped out (oh yeah, iron infusions at the same time for the first 4 weeks as my blood counts were low) then walk next door for radiation. Had a little tiredness but only later in the day, the radiation is really something that I didn't notice (other than after week 5 as previously stated). I may have been the exception rather than the rule but I was told that for my age group it went quite well, not that different.
The port is still in....they will leave it there until after I am done with all follow up work I assume. It is really not that bad, a little itchy at first but not bad thereafter. It and the pump will save you some time as it only swaps weekly, and you are getting just a little bit of chemo at a time (15 mg over the course of the day was my regimen) vs. a larger dose in one shot through an IV in smaller veins. I assume this helped in some part, so as I did well, I would recommend it.
After two weeks, I have my MRI set up, and figure I'm abou 4-6 weeks out from surgery. Some of the reading on here and other boards can be a bit nerving...it would be good to hear more from people who can relate some more positive things as well as not hiding the tougher aspects. But, it is what we all have (and will) experience, so I guess its keep your chin up and keep going.
Good luck and keep us informed! As I'm a few weeks ahead I'll try to keep you with a forward look.

 
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