NHMike wrote:The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.
The radiologist told me about a cancer support group at our local YMCA though I lost the literature on it.
I guess my questions for those with experience are:
- How do you deal with the mass getting bigger while waiting to start treatment?
- Have others had a prolapse of the mass?
- How bad can the financial stuff be with copays, deductibles, out-of-pocket maximums? I think that either the local oncologist or radiologist said something about people getting treatment until they ran out of money for it (sounds horrible to think about)
- Do folks here use local support groups? I was considering trying to find our local group and attending a session.
Please feel free to ask me questions and offer advice as I'm sure that I still have a lot to learn and I'd rather learn stuff these days from others instead of learning the hard way.
Lee wrote:NHMike wrote:The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.
The radiologist told me about a cancer support group at our local YMCA though I lost the literature on it.
I guess my questions for those with experience are:
- How do you deal with the mass getting bigger while waiting to start treatment?
- Have others had a prolapse of the mass?
- How bad can the financial stuff be with copays, deductibles, out-of-pocket maximums? I think that either the local oncologist or radiologist said something about people getting treatment until they ran out of money for it (sounds horrible to think about)
- Do folks here use local support groups? I was considering trying to find our local group and attending a session.
Please feel free to ask me questions and offer advice as I'm sure that I still have a lot to learn and I'd rather learn stuff these days from others instead of learning the hard way.
Hi Mike and welcome, sorry for the reason you are here.
Regarding questions, why are you waiting? Sorry when I was diagnosed on a Friday, I was seeing my Onc the following Tuesday, surgeon on Wednesday and radiation on Thursday. I was in active treatment within 2 weeks of diagnoses. You might want to consider another team of doctors.
I did not have a prolaspse, again I surprised you are not getting treatment yet.
Yes financial situation can be a challenge. Cancer diagnoses is a financial burden.
For me, no to support group. Soon after I was diagnosed, was having lunch with a friend, complaining about radiation dept wanting me to sign up for there 'yoga support grp' or something like that. I didn't have time for this with 2 young kids. Friend told me just say no thank you and leave it at that. This "yoga" was suppose to relax me, not stress me out. From what I heard from a few people who tried support grp, they can bring you down emotionally. There is always a few people in these grp who need professional help and expect you to provide them with that type of support.
Regarding the colostomy bag. I have one, best decision I made, and for me gave me my life back. Most people don't know that I have one unless I tell and I am very open about it. Figure it is a teaching opportunity about colon cancer. Radiation was successful for me, butt destroyed 2/3 of my rectal muscles, thus I was tied to toilet anytime I ate (please understand, this was 13 years ago. A lot of advancements since then). Bottom line, I did not eat until I was home for the day, and many times that was not until 3 or 4 in afternoon.
I told my surgeon she had carte blanc to take all she wanted, just get all the cancer. She was successful. I am NED today.
Anyway, regarding the bag, I can eat what I want and not worry how certain foods can effect my "new" plumbing system". I don't have to plan my days around my new system or always have to know where the nearest bathroom is. I always carry a few supplies with me and change when need to. I'm in control of my day, not my bowels.
You may want to see a ostomy nurse prior to your surgery.
Make sure a board certified colon rectal surgeon is doing your surgery.
Hope this helps some, remember one day at a time. You have joined a wonderful place that has a lot of information and support.
Lee
NHMike wrote:
I did ask the Boston guys about using the locals for Chemo/Rad and they said that it should be fine but everyone told me that the quality of the surgeon makes a big difference. She's a GI surgeon at Brigham and Womens and does the surgery for Dana Farber. Dana Farber is either ranked 1 or 2 in Boston and B&W has been ranked in the top ten hospitals in the US. I did check out her background and she seems top notch. The local folks suggested a a few surgeons closer to home but I don't think that they're specialty surgeons (in that they only do GI work).
mozart13 wrote:Hi Mike,
not an easy situation, of course one wants to start therapy asap.
I had CT and MRI before radiation as staging proccess, but the place that did my radiation therapy did short MRI and CT as well of the area where the tumor was, I was told they put images on top of each other , they gave me tatooes as well.
My understanding is that xeloda is better choice than 5fu when it comes to radiation, 5fu spreads every where, where xeloda goes into the cancer cell and acts as turbo to radiation.
I had CT, MRI and colonoscopy after treatment, as restaging, thats when surgeon gave option,
as cancer was no longer detectable.
Pick time for radiation is about 16,17 weeks from start of radiation.
Make sure you dont take xeloda on empty stomach, drink a lots of fluid, protein diet is important, make sure your bladder is full for procedure so it doesnt shrink.
I hardlly had any symptoms during chemo/rad, except being tired at the end of the week.
Lee wrote:NHMike wrote:
I did ask the Boston guys about using the locals for Chemo/Rad and they said that it should be fine but everyone told me that the quality of the surgeon makes a big difference. She's a GI surgeon at Brigham and Womens and does the surgery for Dana Farber. Dana Farber is either ranked 1 or 2 in Boston and B&W has been ranked in the top ten hospitals in the US. I did check out her background and she seems top notch. The local folks suggested a a few surgeons closer to home but I don't think that they're specialty surgeons (in that they only do GI work).
Yes you really want the best hospital/treatment center treating you. While my surgeon was kind of new, she was associated with a hospital that was ranked 15 as best hospital in US.
If you want to go with Brigham or Boston for surgery, do it. Getting chemo/rad local is a good choice. Many Onc are willing to work with big name cancer center. Big name cancer center calls the shot and local Onc follows the plan. Remember you are in the driver seat.
Good luck,
Lee
NHMike wrote:
Hello Lee,
My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time.
The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.
Jacques wrote:NHMike - I sent you a PM.
To check your PM Inbox, click on the link below:
http://coloncancersupport.colonclub.com/ucp.php?i=pm&folder=inbox
I think it would help if you could create a signature file to summarize your situation in a few short lines. A link for doing that is here:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597
Lee wrote:NHMike wrote:
Hello Lee,
My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time.
Stick with a low fiber diet until radiations starts working. If you decide to go on a liquid diet, be sure to drink some protein, vitamins (like Ensure) type shakes.
Lee
ocstacy wrote:The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.
Good evening,
My mother has the same diagnosis as you and Stage. She is Stage 3A. She was diagnosed May 2017 and is on week 3 of XELODA. She was tolerating XELODA pretty well up until this past weekend. She is also older than you, age 77 with osteoporosis. The weekends for some reason make her feel more fatigue. She is eating and keeping her weight up. I noticed after this weekend, she is sort of complaining of her feet getting hot and itchy, which is another side effect from the drug. I bought her the best lotion, socks, pants, fragrance free lotion, body wash, under wear, Imodium, aquaphor, etc, etc. The diet was high fiber prior to Radiation TX. 13 days after her RAD TX, she started to go opposite to Diarrea. Now she has to stop taking stool softners and change her diet to BRAT diet.. more white carby foods. My mom can't really go anywhere as she has to be near a toilet as she feels like she has to go but nothing comes out, or something comes out. I wish I could just help her feel better. Sad to seer in pain and struggling but who says it's easy. She has until Aug 16 to complete this neoadjuvant therapy.
I was able to help my mother with her insurance, and now she is covered at 100% with no co pays at the hospital and her meds are covered. I fought real hard to do this for my dear mother who has barely any income or social security. I researched and interviewed patients of the best colorectal surgeons on the west coast, we live CA. I found a USC colorectal surgeon @ KECK USC. He told my mom and I, that he would be able to hand sew her a new rectum and avoid having a permanent colostomy. I really really LOVED this surgeon and so glad that I did my research.
Don't think you will go soon. There are people with full response or NED (No Evidence of Disease) You can get through this. Cancer is scary. I used to work at the RAD ONC.department at a hospital. It was depressing as I mainly worked with palliative patients. Chemo has changed since then and so has TX.
I live two houses down from her, a really silly situation. My brother will not allow me to enter my parents home as he own their home now and I am upset about it. So since I found out I called APS, and I have contacted attorneys( sorry for the rant!) As a daughter of two elderly parents, please make sure you have a trust and will and you make everything equal with your children. My parents never had one and older brother really threw me under the bus when he moved in with my parents. He put their home in his name and wants nothing to do me cause I found out and I had to call APS. Now we hate each other. My mom is starting to give me her jewelry, etc, etc. Always good to have a plan of course. I will pray for you and as I was told by my mom's oncologist, Xeloda is prob the lightest oral chemo drug, there are many other's that are much more harsh. You can do it. Find a a good colorectal surgeon!!
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