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jena58
Posts: 19
Joined: Apr 2013

Hi everyone. I'm new to writing on this forum but I have been a visitor reading it for about a month. I found my self in a bad place. I am 20 months out of treatment for stage 4 anal cancer and hit a low, big time recently. Fatigue, memory problems, digestive problems etc got the better of me. I felt better after visiting this forum and realising that I'm not alone after all. You all sound so lovely. I'm in Australia but haven't found a forum anything like this one here. 

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

I'm very glad you've found this site, but so very sorry you've had a reason to look for it.  I hope you'll find comfort, support and information here.  Many of us deal with some of the same issues you have mentioned, so perhaps someone can give you some advice that will help you.  Were you initially treated with chemo/radiation and then your cancer returned or were you diagnosed with Stage 4 to start out?  I'm just curious as to how this cancer is treated in your country, but I believe chemo/rad is used.  Correct? 

Please come here any time you need support.  We will give you our best! 

jena58
Posts: 19
Joined: Apr 2013

Hi mp327, I've read so many of your helpful replies to others. I was initially diagnosed with the tumour and one lymph node in my right groin. I started treatment for one week during which time I had a pet scan (initially I had only a ct) the ct showed the tumor and node. The pet showed extensive involvement of lymph nodes through abdomen and para aortic . It also showed a tumor in the left lobe of thyroid. T2 N2 M1. So planning had to be changed in incorporate all of the extras. Obviously ct scan isn't as good at picking up cancer as pet scans!

the treatment was chemo and rad. My first pet after treatment showed another lymph node just above the clavicle so within  1 year I was back for another 6 weeks of the same treatment. In the mean time I had had the left lobe of thyroid removed.

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

Thanks for providing more info.  It is true that PET scans can often show things that CT's can't.  Thank goodness your doctors did a PET.  I'm sorry for all you've had to go through though.  Other than residual side effects, are hope you are doing well.  Please keep us posted and thank you for your kind words.

sephie's picture
sephie
Posts: 544
Joined: Apr 2009

ask us anything ....we are all here to help each other....i am 3 years 7 months out and still have tons of fatique and memory loss...  hope yours gets better quickly....sephie

eihtak
Posts: 887
Joined: Oct 2011

I'm sorry once again to have to welcome anyone here, but yet so thankful we have this place to come to. I am just a bit ahead of you, 24 months post treatment for Stage3b anal cancer. I'm curious, was the thyroid tumor a different cancer or related to the anal cancer. Last spring I was diagnosed with breast cancer unrelated to the anal cancer. I am overall feeling great, but do also have some of those symptoms you have mentioned. It seems we all do at least occasionally.

There was recently a post from another member under the topic "social work intervention" also from Australia. What a small world and how great that we are able to connect.

I will add you to my thoughts and prayers as we all move forward in health!

Lorikat's picture
Lorikat
Posts: 566
Joined: Jul 2011

Hi..  I'm sorry you are having a hard time!  I am 18 months out from treatment for stage 2 anal cancer and I also have the problems you mentioned...   Wish I had an answer for both of us".....

Marynb
Posts: 1134
Joined: Aug 2012

Hi. Sorry to meet you here, but welcome. I am also about 20 months out from treatment from this cancer. I completely understand what you are feeling. I had a good cry for myself the other day because my memory has really changed since treatment. Not good in my line of work! I told someone that I have lost several IQ points! I really think that I have. However, I really think I am a better person now. A little slower, but better. I know what matters now.

I am glad you decided to post. I find this site very helpful. I wish we lived closer to each other so we could form a support group! Hang in there. You are not alone.

Mary

jena58
Posts: 19
Joined: Apr 2013

Marynb, distance doesn't matter, I'm just glad to talk !!!

chemo brain and neuropathy and digestive probles get the better  of me sometimes. I never had a sick day prior to treatment , now I hang out for a good day! I try to keep active, I've started a run/walk regime and recently did the 5km run for the kids to raise money for the royal children's hospital here but I've hit an all time low and no energyto do anything. I can spend 10 minutes staring at my sons lunch box, I know what I have to do with it but can't retrieve the info to pack it!! They call it chemo brain but really?? This far out if treatment. I had ct of brainn and bloods done last week , but I think it's just long term effects. Wish I'd had some kind of warning! I've gone from healthy and fit prior too diagnosis and treatment to a basket case since!! I would ike to hear from anyone else with these long term effects. M

I

mp327's picture
mp327
Posts: 3120
Joined: Jan 2010

Some studies indicate that chemo brain is real.  I certainly believe it.  I used to do medical transcription years ago and was a top-notch speller of medical terms.  Now, either due to chemo brain or aging (or both!), I can't spell worth a darn.  On my desk, within arm's reach, are a regular dictionary and a medical dictionary.  I at least make myself look words up in the books instead of relying on my computer to correct spelling for me!

Good for you for doing that 5k race!  I am a runner and have a great appreciation for what it takes to do a race.  I'm sorry that you seem to have hit the wall with your energy level.  I have a bout of fatigue now and then, but find that even a minimal amount of exercise every day can be a boost. 

As for digestive issues, I went over 4 years without having any major ones, except for diarrhea in the months right after treatment ended.  Then all of a sudden in late January 2013, I had an intestinal obstruction and was hospitalized.  Although never really nailed down as a cause, my doctors thought it was probably due to scar tissue/adhesion in my intestine.  It was very upsetting to me to think I had come that far with no major problems then got slammed!  It happens though, so we always have to stay on top of anything that crops up.  If you google radiation proctitis, you'll see that there are two different kinds.  One usually occurs right after treatment.  The other can oftentimes come on months, even years after treatment.  As they say, radiation is the gift that keeps on giving.  :(

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