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A Place For Us

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Hello everyone,

I would like to take this opportunity to be the first to post on the new Anal Cancer Discussion Board. I have been posting on the colo-rectal board for a couple of months now and find that they are an awesome group of people to be connected with. While there are similarities for all of us fighting or caring for someone fighting any cancer, the specifics of treatment, side effects, testing, etc., do differ from one type to another. This results in different concerns, questions, and dialogue. I contacted Greta here at CSN and she agreed to open a discussion board for us, it will be a on a trial basis to see if participation warrants its continuation. It is my sincere hope that it will and that we will all benefit from connecting and sharing.

Blessings to all,
Joanne

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Joanne,
I have several friends on another forum that have anal cancer and feel they have no place to discuss their concerns. I'm going to head over there right now and invite them to join you.

Thanks for thinking of others!
Diane

geotina's picture
geotina
Posts: 2069
Joined: Oct 2009

I'm so happy you had them create a board for anal cancer but don't forget to come and visit your old friends on the colon board - good job getting this done. Tina

pdees
Posts: 13
Joined: May 2011

Woke up this AM feeling achy and a litle nauseated. Went on line and happened upon your post with the cat and the sun glasses. Really put a smile on my face and made my day. Just started treatment for Anal cancer an a lot of my questions have already been answered.

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

Joanne,
Thanks for doing this! I think it is wonderful that you were able to get us a board. One of the reasons I searched elsewhere was because it was so hard to find others with the same type of cancer.

I will be here to help support the discussion board. Thank you! You don't give up and that's what I like about you. It's that same preserverance that will get you through ridding your liver of that one tiny spot!!!

God bless,
Liz

Kathy09's picture
Kathy09
Posts: 99
Joined: Jun 2009

Im sure people will join you. I have bc but noticed this new cancer topic on the board. Best to you.

clrrnbsn
Posts: 1
Joined: Jan 2005

Thank you for getting this network together for support for us anal cancer people...
When I was diagnosed in 2002, I could not find a support group just for anal caner and I am so happy to see many sites opening up. We all need to know someone understands us.

HollyID's picture
HollyID
Posts: 940
Joined: Dec 2009

So here you are -- don't forget us though!! I'd miss your gorgeous smile and your wise words!

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Wow, I like this- same diagnosis and, in at least Joanne's case, basically the same treatment. Will be back to "discuss" stuff tomorrow!
Thank you, Joanne!

phillyAC
Posts: 6
Joined: May 2009

WOW - this is fantastic! This is exactly what I've been looking for since 1992 when I was diagnoised with anal cancer. When I was going through my treatments of chemo and radiation, I sat with the breast cancer ladies, but I felt out of place. I ended up with the men who were going through prostate cancer. Our radiation treatments and the unfortunate problems from radiation were more similar.

You have opened a very important link for me and I'm sure there will be many folks that will follow.

Off I go to work, but I'll check in more frequently and be an avid supporter.
Blessings to you and all that are on the CSN connection.

mp327's picture
mp327
Posts: 3073
Joined: Jan 2010

Joanne--

As an anal cancer survivor, I want to thank you for your successful efforts in establishing this forum. There are few places such as this for those with this cancer to connect with others going through the same experience. Anal cancer continues on the rise, so I hope there will be good participation, allowing this board to remain. I look forward to participating on this forum and sharing my experience to help others.

mp327

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Glad you found us! My initial treatment was in 2008 and thank goodness the radiation was successful in treating the mass. However, that was not without awful side effects on all things pelvic! My bowel issues were lingering but not constant. The effects of the radiation can take a long to time run their course. If I recall correctly, it is still "working" for a year after the treatment ends. Mine was worse as I introduced spicy and rich foods back to my diet. I still have episodes from time to time. Do you find that yours is constant or random? Is it improving or remaining pretty much the same? I am sure that others will be on shortly to add their opinions and expertise in this area.
Blessings,
Joanne

msannstar's picture
msannstar
Posts: 7
Joined: Sep 2009

Joanne

Yes I believe its much better then before because I had no control over it and the stomach pain isn't as bad as last month. When I eat food it's constant bowel movements.

My doctor gave to lotomil pills to slow the loose bowel down and hyoscyamine pills to help with the stomach pain. But taking the lotomil can made me not have a bowelment for 3-5 days

Last week my GI doctor did a upper GI my test results showed I have a hiatal hernia and also a lower GI that test results showed colonic mucosa with mild hyperplastic on the sigmoid

Marcia

z's picture
z
Posts: 1266
Joined: May 2009

Marcia,

I completed treatment 6-30-09. I had urgency and several bathroom visits a day. Evenutally the urgency and frequancy lessoned and I'm basically back to normal. Maybe 2 bathroom visits a day, as compared to 1 pre treatment. It will get better, as the radiation, I've been told continues to work for up to 6 months after treatment is completed, therfore your colon and anal canal are recuperating. I did have an infection in my colon after treatment, which I was told is common after radiation. I was given antibiotics to solve that problem, in which the antibiotics worked. I hope your doctor can help you with your colon. I wish you well. Lori

phillyAC
Posts: 6
Joined: May 2009

Here's what worked for me after some recent surgery that took 3months to get me back out the door with reasonable confidence. The BRAT diet - banana, rice, applesauce and toast. See a Nutritionist or Dietician that can guide you slowly into a normal diet and confidence that the bathroom is suppose to be an occasional place you go - not live there. It took a couple of weeks and some big changes, but my colon healed and it is my life again with some foods that I've learned to just eliminate from my diet.

Once your nutritionist gets your tummy on track, then you see how quick the rest falls into place. I also see a Gastroentologist (spelling may be wrong) - they can help with the meds your on and help to manage better the meds that can aid in stopping loose uncontrollable bowel movements.

I'm going to be here so let me know how you make out!

Blessings to you!!

msannstar's picture
msannstar
Posts: 7
Joined: Sep 2009

PhillyAC

This make my fourth month on the Brat diet and on TPN I been seeing a nutritionist also that long.
Thank u for sharing I really need all this help from others.

mp327's picture
mp327
Posts: 3073
Joined: Jan 2010

I can certainly relate to your ongoing bowel and intestinal issues. I had treatment back in July - September 2008 and still have urgency and frequency at times. Mine is mostly diet related and happens when I get off course and eat something I shouldn't. Overall, though, I am much improved and these issues no longer keep me homebound like in the beginning. You are not that far out from treatment, so the best advice I could give is to keep working on tweaking your diet (with the help of a dietician or nutritionist, if necessary) and be patient. My rad onc also told me it would be fine to take an Imodium AD routinely once a day--you might try this. My best wishes to you--I hope you see improvement very soon.

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

I was diagnosed with anal cancer 5/08. Like you,I also had 31 rounds of radiation and 2 courses of chemo.I am now 17 months out from last treatment and feeling pretty good.I just had a scope today and am clean...Thank god. The bathroom problem will get better. You also have to learn which foods trigger the bathroom dash.

Beekay1280
Posts: 10
Joined: Dec 2009

Congrat's on being ned and welcome to this board. I am so glad that CSN opened up this board to anal cancer.
I too had 5 weeks of rad and two tx of chemo, My last rad was end of June 09, I am still having some problems with stomach, bowel and urine problems. Just had surgery to open up the vagina. I highly recommend that you start using dilators know that you are just a few months out of radation. I wish my radation doctor or oncologist would of ordered them right off the bat. I ended up going to a gyno to help me with my vigina problem. Also reference the inflammation to colon will settle down.

Brenda

msannstar's picture
msannstar
Posts: 7
Joined: Sep 2009

Brenda

o thanks Brenda I go to my radation doctor Monday I just found out about my vagina problem yesterday very painful so can't do that right now. I'll see if one of my doctors can order me a dilator.

cookiehana
Posts: 1
Joined: Jan 2010

I'm not sure how this works - my first day on this network, so if this goes public...great, if not you can reply privately.

I was 17 when I was diagnosed with a rhabdomyosarcoma of the rectum. A very aggressive tumor treated with 11 months of chemo and 2 months of radiation.
I am now nearly 31 Thank G-d and I basically made this journey all on my own.
My doctors seemed to have little knowledge as to the after effects of the radiation and messed up many a time by misdiagnosing me things like bladder cancer (horrible bleeding in the urine, ended up being side effect of radiation) and putting me on a pill to get my period - which didn't cause a bleeding, just intense pain and cramping until 3 months later they finally figured out that my vaginal walls were sealed shut. Surprise. They nearly did a hysterectomy on me and it was the most painful experience of my treatment.

Anyhow its been quite an interesting life, hot flashes and menopause at 17, uncountable bathroom accidents in the most hysterical places and divorce at 30 due to my husband's inability to deal with marriage in general, but specifically the sexual uniqueness of my situation as well as susceptibility to all sorts of infections (bladder, yeast, vaginal).
I recently got my divorce and realized this is a chance for me to start over, to embrace myself and my body and that whoever I marry next (for good) will need to be compassionate and understanding of my medical past.

I would love to hear from anyone who feels they have something to share and specifically has had success with vaginal dilators as well as any other holistic approaches to scarring.
If you want any advice from a 13 year veteran of digestive, hormonal and vaginal disfunctions...feel free to ask.
I wish you all healthy and goodness for the rest of your lives.

Hana

mp327's picture
mp327
Posts: 3073
Joined: Jan 2010

I was diagnosed with squamous cell anal cancer in 6/08 and received 6 weeks of chemo/rad. The radiation definitely caused vaginal stenosis, however, I was fortunate in that it did not become completely fused. I have been using vaginal dilators since about 2 weeks after my treatment ended. It has helped tremendously. I was given the first one by my rad onc, but it was rather small and soon I needed a larger size. I ordered a set of 4 in different sizes and have been able to go up 2 sizes. I'm probably at my limit. The best way I've found to make the use of a dilator most effective is to actually sit on it, stradling a bench. Doctors will tell you to be in a lying position, which may increase the width of your vagina, but does nothing to increase the length. Sitting on the dilator actually pushes it farther in. However, be advised that this can be painful in the beginning and may produce some bleeding. It gets better as you increase use and eventually subsides. This should be done every other day for at least 20 minutes.

I hope this info is helpful to you. I wish you the very best.

map2005's picture
map2005
Posts: 2
Joined: Jan 2010

What you have written here really hits home for me. From relationships to vaginal dysfunctions. It's like you're talking about my journey. I've been in remission for almost 5 years and have had the hysterectomy along with a resection and bagged. My tumor was 1 cm. from the sphincter muscle with radiation treatment doing the rest to destroy it. I had a tube in my pelvis for 5 months to drain fluid from a fistula or something like that and I use a dilator until I find a human one (no disrespect). The hard plastic ones they gave me were insanely big and uncomfortable so I would seriously think about investing in a good one at an adult store or buy one on line. I use it mainly when I have to go to the gynecologist so I'm not so tight which some would consider a REAL plus. I mainly watch out for foods or candy that may cause me gas because I'm a teacher who does not want any "surprises" with my middle and high schoolers if you know what I mean. I don't limit myself on activity and finally found good looking swimsuits that are flattering on my new body. Relationships with the opposite sex are not occurring for me and I try to stay positive and hopeful although I really do not want to marry just companionship of an awesome guy sometimes. It certainly is a life changing cancer attached with stigmas if you survive it and end up with a bag. My heart and respect goes out to all who are braving this cancer and its after effects. Your courage is my motivation to remain hopeful and positive.

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

Good job!!!!

Don't forget to keep us posted on the colorectal board, also!

Anal cancer is so different, you are correct! I had a mix....squamous cell carcinoma (anal usually) in the first rectal fold (rectal...lol). Then, I also was 'lucky' enough to find stage II breast cancer (unrelated...adenocarcinoma) 6 months after my first dx...So I guess I will add this board to my favorites, as well...

Hugs, Kathi

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

CRC or anal cancer are all mostly pain in the butts anyway ya slice it...Is it ok if we CRC people refer to ya'll as "cousins or cuzs" cause we are all pretty close in dx and in spirits also......Yeah, I just had to peek in here.....Love and Hope to us all, Buzz

nigella
Posts: 11
Joined: Jun 2009

Hi Everyone,
Thank you, Joanne, for opening this discussion board. I was diagnosed with anal cancer in May 2009 and had chemo 2x and radiation during July and August 2009. So far, so good because the tumor is gone. I don't feel quite so alone now that I hear others have had continuing bowel difficulties and stomach pains, the after effects from the treatment. I'm still experimenting with suitable nutrition and some days are better than others. The most embarrassing episodes are regularly passing stinky gas (flatulence) and I work in retail! Phew! My hair is very thin but I didn't lose all of it. I can't see any regrowth yet. What are others experiencing with the hair issue?
God bless you all,
Nigella

z's picture
z
Posts: 1266
Joined: May 2009

Hi Nigella,

I see that you have completed treatment in August 2009. I completed treatment 6-30-09. My hair today has come back very well. Thick on top, but a little thinner on the bottom. I think everyone is different and this will just take time. My bowel problems have lessoned. I now use the bathroom a couple times a day, as compared to 10. I am rather gassy though. Luckily I can hold the gas until I'm in the bathroom, but when I'm home it doesn't matter. I'm so glad that you posted, I've been wondering about you. So far all my biopsys, pet-ct, dres have come back negative ned. I have my next pet-ct in May. I hope you continue good health, and that your bowel and hair issues will resolve with time. I wish you well. Lori

SueRelays
Posts: 489
Joined: Dec 2009

Hi my hair thinned as well with my treatment for anal cancer. Someone recommended a shampoo/conditioner called Nioxin. ( think that's how its spelled).....it really helped....and massaging the scalp nightly is supposed to help as well! My hair is as thick as ever except one small spot on the back of my head that just won't seem to grow.....
I found the shampoo at Ulta...just a beauty supply shop.

I love cats's picture
I love cats
Posts: 3
Joined: Jan 2010

Nigella, I was diagnosed 3 months after you. I didn't lose all of my hair, either, and I can't see any regrowth yet.
I agree with you, after reading what the others say, I don't feel quite so alone.I couldn't believe how many had anal cancer. Have you found a diet that works for you? I, too, am having a problem with gas. I am still afraid to go anyplace, as I'm not sure I could make my way to the bathroom soon enough.

Karen

pdees
Posts: 13
Joined: May 2011

This is the beginning of my third week. Still having problems with a sore mouth. Mostly on the underside of tongue. Still hard to talk. Starting to have a problem with gas. Better head for the bathroom if you even THINK its gas so there won't be any surprises. Other then that I feel pretty good. When you don't know what is coming next, this place is the best place to come because if no one has been there has no idea what it like.

bunny62
Posts: 8
Joined: Mar 2009

Thanks so much for getting our own place. It is very hard to find places that deal with anal cancer and a lot more people are being diagnosed with this every day. So thanks again.

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