Newly diagnosed with rectal tumor - lots of questions and fear

and it still does. 

I'm glad to hear that you walk. I think it is one of the best exercises out there. It is not only good for the body, but it is good for the spirit. 

After Radiation, I had uncontrollable bowels. I could not leave the house. Then I discovered this wonderful little canyon, not far from home. While I live in the desert, this little canyon offered a few trees and some big sagebrush and not too many people, thus, I when I had (and still have) emergency 'I want to go and go NOW' BMs, I just found myself a hidden spot - or somewhat hidden - and dropped my britches and went - Of course, I totally clean up the area, and leave no trace -  I can tell you right now, this saved my life. My daily walks, which turned into hikes, keep me alive, I know they do.   

So, get yourself - if you don't already - some of those biodegradable doggy bags, wipes, and plan on walking just as much as you can.   I would suggest that, during treatment, you don't go too far afield. As Kim mentioned above, after a while, fatigue may set in, and if it is bad, you will find you suddenly cannot move (I have literally crawled to the couch, many time).

Keeping a very detailed journal will also help. Maybe two. I kept a journal of everything that I felt, every pain, niggle, every single thing, and questions also. At my next appointment I would go through the list of questions and anything that I wanted to talk about with my Oncogist. I also kept a journal of everything that went into my mouth. That way, I could tie certain foods to certain reactions - diarrhoea, constipation, sickness. 

And I am sure your radiation oncologist will tell you when you go in for mapping, that he does NOT want you to loose or gain weight. It messes with the markings. You may get little tattoos, I got stickers.  My Rad Onc re-mapped me during treatment, because I lost seven pounds one week. He was not happy, and had to move the stickers. As you know, there is no moving tattoos. 

Here is the link to the bidet I purchased Bidet .  I bought mine in 2013, and use it several times a day. It has never broken. I gave it five stars.  You can get ones that are plumbed into your hot water. I personally like the freezing cold blast of water, especially in the morning, it wakes me up.  I use special towels afterward, laundering them sperately of course.  This is the Sitz bath I used Sitz Bath, very basic. I see they have some nicer ones on there now. 

I tried sitting on one of those Donut things, but it was even more uncomfortable than sitting on my bum. I went through a few different pillows until I found one that positioned me, so I wasn't sitting on the painful spot.  If it gets bad, you will find a way to make it less bad. 

Still, I really do hope that you are one of the lucky ones who just breezes through treatment.  

Tru

I was like you, only I was 77 at the time!!I used RASDIA gel from wallmart to soothe my bunn.  When my colon was reconnected I developed a fistula.  That meant 6 more weeks on a bag, but the fistula healed itself from the inside out.  A colonoscopy the following year showed I wasNED!!! Been that way ever since and am currently 87.  If I could do it at my age, you can certainly do it at yours!! It may be a bumpy ride, but it is doable.  Best of luck to you!

Hi Joy,  I hope you are having a great day!  I sent you an email through this site.  I didn't know you could do that until yesterday so just wanted to pass along an experience/information with radiation.

Jvana06 said:

? Dingleberries!!

Omg!  I love this.  Thank you!  With such a personal and unsexy diagnosis it is so valuable to have humor.  I will never go to radiation or any appt for that matter without wipes in my bag!  Thank you!!

I had my colonoscopy over in Seattle, three hours from my home and we stayed in a hotel and during the prep I recall the paper thin, industrial toilet paper in the hotel and it was a nightmare.

I've always brought my own TP when staying in hotels as the paper is just to scratchy for my behind even now.  Don't be afraid to carry it in yourself.  Even when visiting my father, he knows to buy me special (my brand) of TP (God Bless him) because he uses the icky kind.  You will find this tip another good one.  You will do everything to spare your hiney after radiation burn.

Kim

Hi, I actually had anal cancer but besides that, I can identify what you are going through now.  I was 51 when I was diagnosed, with two kids at home (ages 10 and 12), as I started my family late.   I also had bleeding previously that I could have checked out earlier but I didn't because I didn't think it was a big deal.  Well the colonoscopy discovered it was, and I was diagnosed at stage 3a.  Lucky it was caught there instead at stage 4.   You can't second guess things, just be happy that they caught it at stage 2.   That is better than what it could have been. 

So as far as treatment, I had radiation, 5FU and mitromycin(?).   Don't go buying a whole bunch of creams ahead of time.  My hospital ended up providing me everything I needed and they didn't want me to use anything else.  I did buy a bidet and really liked it.  I also bought a very soft toothbrush and special toothpaste.  The other thing that I ended up needed towards the end was adult diapers (as I had really bad diarrhea and had an accident once trying to walk from the car to the hospital and towards the end it was the worse part of treatment.)  It is a good thing that you are so close, you won't need someone to drive, or you could just get uber and be there in a couple of minutes.  Although treatment is no fun, some people are able to handle it better than others, and what some people perceive as painful, others do not.  Being younger may help you during the recovery.  I know that I have recovered more fully and with less long term problems than some other people, but I could have just been lucky.  You probably can handle the day by yourself during the chemo and radiation.   I was in a hotel by myself (because I lived 2-1/2 hours from the hospital) for the first 4 weeks of treatment. The 5th and 6th week my mom joined me,  You won't want to do any cleaning or shopping or getting mail or cooking though during the first 4 weeks.  I found it helpful to have someone around at the end,  especially the 6th week.  I had extremely bad diarrhea at tha time.  I mainly rested and took a nap every afternoon.   Please let me know if you have any other questions. The treatment will seem like a really long time when you start, but it will go by quickly.  I did lose 30 pounds but I was quite a bit overweight when I started and could lose that much and still be overweight.  But unfortunately, I have gained it back after treatment.   The doctors will not want you to lose weight during treatment, so you have to make sure that you eat even though your appetite might not be normal.

Jvana06 said:

Weight loss during radiation

SoCal42, thanks.  I will try really hard to keep eating good during treatment.  Don't want that radiation beam radiating something else.  I know there is a spread out and it's not totally direct, but, I am going to work really hard on keeping weight on.

I just read through your about me page and treatment plan you've been working through.  How are you doing?  Had your scan this month yet?  Sounds like you'll be taking a break from chemo?  Hope your scans showed shrinking of the tumors.

Thanks for asking! Right now, I have one more week of planned chemo, then a CT scan is scheduled right after that. If my two lung mets look stable or smaller, and there are no new mets, we plan to stop chemo and monitor every three months by CT, and wait and see what happens.

Jvana06 said:

Thanks!

Annie4145,

Thank you so much for detailing your experience, that is very helpful.  When I go to get mapped on Jan 6th I'll ask about the creams and supplies they'll be able to provide, that is good to know.

How are you doing now?  I have a friend who's sister was diagnosed with anal cancer and we've been talking.  She is going in Dec. 18th to find out after waiting 6 months whether the cancer is gone.  She had the chemo and radiation but there were still traces of it left.  They decided to wait 6 months and she'll be going in to find out if she'll need surgery and a permanet colostomy bag.  She is very worried and hoping it's all gone.  I know if she has to have surgery she's prepared and ready, but she is really hoping for good news.

 

Thanks for asking.  I was diagnosed with stage 3a, but I have been very fortunate.  I have recovered well from treatment.  I don't have anything that hinders my day to day life, and I have been fortunate to only have side effects which I can live with without major issues (bowels still don't work regularly like they used to!).  But I know that some people have a much more difficult time in recovery so I am lucky.  I get scanned regularly and it looks good so far.   what part of the country is your friend's sister at?  Is she treating at a major hospital, such as a teaching hospital?  Hopefully the new scans are good!  The board for anal cancer is good, but sometimes doesn't have a lot of posts.  But there are some regular posters there if she is interested.  Sometimes it takes some time to have a full response to treatment, so I hope that it is all it is.  If she can get it into NED (even if she needs surgery), my doctor assures me that the statitics are much better than what are published, and as a woman, HPV+, HIV-, the statistics are very good long term.  I hope that she can fall into that category. 

Jvana06 said:

Thanks

Real Tar Heel,

Lots to learn, hoping the nursing staff and Dr's will be able to assist with problems that arise.  Shards of glass sounds pretty painful.  But, if there is a light at the end of the tunnel it will be worth it.  I've been struggling for a while.  I know this will be a painful journey and hoping through communication in this group there will be some guidance.

How many more chemo treatments do you have to go??

Hi, sorry for the late reply. There was some confusion regarding my treatment schedule and I didn't have one for a month. I'm back on schedule now but they let me take the week off for Christmas. So then, I'm not sure whether they will end it on the scheduled week or whether I will go for an additional 6 weeks. I'm guessing the later.

I don't like that painful part but for me it's momentary, a little Prep H and I move on. I've been most bothered by the anemia/fatigue. YMMV.