A Place For Us

msannstar

Beekay1280 said:

Stomach Problems
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

stomach problems and loose bowels
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

Beekay1280 said:

Stomach Problems
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

Hi Brenda
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

cookiehana said:

Hi Brenda
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

Hi Hana
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.

nigella

anal cancer
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

nigella said:

anal cancer
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

Hi Nigella
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

map2005

cookiehana said:

Hi Brenda
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

Can relate
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.

bunny62

Anal cancer
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.

SueRelays

nigella said:

anal cancer
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

Hi my hair thinned as well
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

nigella said:

anal cancer
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

Anal cancer
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

geotina said:

Joanne
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

Woke up this AM feeling achy
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.

pdees

nigella said:

anal cancer
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

starting 3rd week
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.