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Anal Camcer Survivor of 7 months

rae7
Posts: 4
Joined: Sep 2008

Anyone else diagnosed with this, gone through chemo and radiation, then have enteritis and proctitis??

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Your CSN Staff
Posts: 200
Joined: May 2008

Hello,

We encourage you to do a search of the CSN site for contributions made on Anal cancer. To do this, type in key words such as "anal," "proctitis," and "enteritis" in the search bar at the top of this page. You can then browse the results and contact other members if you choose.

We wish you the best with your side effects.

Kind regards,

Your CSN Staff

sramirez
Posts: 6
Joined: Nov 2008

I just underwent a second biopsy for my anal cancer as well. Finished treatment for chemo & radiation. Then I contracted H. Pylori so was back in the hospital another 10 days. I may be facing radical surgery as well with a colostomy.

Thanx for the info Mrs. Murphy & Kaylynn. Glad to have other women to talk to about this type of cancer. It's hard to discuss w/others.

MrsMurphy
Posts: 9
Joined: Oct 2008

Wow, this cancer really kicked my . . . .

I'm here, cancer free for a little over a year. It was the most undignified diagnosis I could imagine. Although my health care team was wonderful, there is really not much dignity when the doctor says, "Drop your pants, and spread your cheeks so I can see how burned you are. Oh, my. Nurse Judy, come here, plese and take a look at this." I've been through the radiation and chemo, I had the world's worst hemmorhoids ever (at least to me they were).

In additon to all that my personal and financial world crashed all around me in the course of about six months. I was hit with so many different crisis all at once, that I seemed to freeze up and couldn't do anything. Got through it by the grace of God and the angels he sent to watch over me, my family and friends, sometimes complete strangers who heard of me and a need I had, my medical team who were all outstanding, and even the young guy in the parking lot at the grocery store who lifted the 25 pound bag of dog food into the trunk of my car for me because I was too weak to lift it.

Rihgt now I'm content with my life for the most part. I've figured out what is important to me and what is unimportant, what is a priority and what is not. I'm scared, though, that this wretched cancer will come back, or maybe it will come back in some other location of my body. I'm afraid that I wouldn't be able to fight back again.

MrsMurphy

kaylynn16
Posts: 1
Joined: Oct 2008

I had chemo and radiation july-07 23 radiation and 2 weeks in-pt chemo. they told me 95% very slim chance it would come back,,, here it is Oct. 08 and i am having my whole rectum removed and i will be wearing a colostomy bag... permanantly. supposedly it has come back more aggressive and is already 3cmm I am supposed to see the surgeon on tue. 11-4 to find out surgery date.. I was really convinced i had won the battle since all test results and exams and PET scans came back normal. until this last physical exam perked my dr. ears, he ordered a biopsy and bam ...... back again... so needless to say i was mad at the world and swore i would not do this surgery, there has to be another option... ???/ through a lot of research and prayer and second and third opinions we have no other option. I DO WANT to LIVE... so anyone else who has had this surgery , feel free to let me know how it was and is... thanks..

MrsMurphy
Posts: 9
Joined: Oct 2008

Kaylynn,

You poor thing. My heart aches for you. There are no other options? You've had second and third opinions too? That sucks. It's not fair. I'm sooo sorry. Hang in there, one day at a time, and know you are covered in prayer, it's the only thing I can think of to help you, and I know it works.

MrsMurphy

MrsMurphy
Posts: 9
Joined: Oct 2008

You are on my heart today. How are you feeling?

MrsMurphy
Posts: 9
Joined: Oct 2008

Hello Ms. Ramirez, my fellow survivor,

Forgive my ignorance, but what is H Pylori? And, yes, I find this cancer difficult to talk about also, perhaps it is because of its location, I find it embarassing. The treatment has left me with some side effects, like, early menopause, hot flashes, etc. How about you?

sramirez
Posts: 6
Joined: Nov 2008

H. Pylori is a stomach bacteria. I couldn't believe how sick it made me. After taking (3) antibiotics to get rid of it, the meds also got rid of all my "good" bacteria in my system. So... I waited another (2) weeks for good bacteria to grow (vaginally). It was a miserable period.

I haven't noticed early menopause which was surprising to me b/c I'm 54. My regular dr. put me on some estrogen creme for a short period of time to help set up the good flora to grow.

Hopefully, by tomorrow I will have some news of my recent biopsy. If it's positive, probably more chemo. Obviously, rectal surgery doesn't sound too enlightening. And missing more work after a (3) month period of recovery doesn't sound too great either.

Glad to have found a couple other folks to talk to about this type of cancer.

S. Ramirez

MrsMurphy
Posts: 9
Joined: Oct 2008

I missed quite a few months of work during my diagnosis/treatment/recovery. I type for a living and, obviously because of where the cancer was, I couldn't sit very much. My employer was extremely understanding and held my position for me. What type of work do you do -- or did you do? Is your employer working with you and keeping your position available to you?

sramirez
Posts: 6
Joined: Nov 2008

I work in the academic area. My job position actually changed right before I had treatment. I'm now in a more relaxed setting in our central office. However, so far the work load almost seems too boring - I'm used to being active all day long at work.

My biopsy report came back this week - all clear! The biopsy revealed scar tissue only so I'm in the clear for another few months. It was news I wasn't expecting - it really took me by surprise. I'm relieved to say the least. No more dr. appts. for 3 months. But obviously the worry never goes away.

I also work a part-time job at a local small retail store, so that means standing on my feet. I'm just subbing right now for other staff that want time off, which is fine. My legs still get pretty tired standing for very long. I've found that is one of the problems still plauging me is my legs being weak. If I bend down I have a hard time getting up. I walk the dogs every night to strengthen my muscles, but still find my legs achy and weak.

Thanx for your responses - it's good to know there are other ladies out there to talk to abouat our type of cancer.

S. Ramirez

vickie55
Posts: 3
Joined: Mar 2009

I am new, just joined this site and as I was reading what u posted in Nov 2008 caught my eye. No one understands when I say my legs are weak and hurt so bad. I more or less have an office job but always getting up and down from my desk. Some days I have to use to desk to pull myself up. I wonder what anal cancer and the treatments has to do with our legs hurting. I go for a colonoscopy today, I had one the year before I was DX with cancer and they only found one polyp. Do you get one every 3 years ?

ACW189
Posts: 24
Joined: Feb 2009

I completed treatments in May 2009. It's now almost 8 weeks post treatment and I too have much leg pain. It seems to be more muscular though and extends from my calves all the way up through the hips. My medical oncologist would like to wait for the results of my first post treatment CT scan just to be sure there's no joint/bone issues as sometimes very small fractures can occur. If all is clear he will prescribe physical therapy to help stretch the muscles which he suspects have atrophied from radiation and long periods of inactivity. I do try yoga stretches in the morning -- help somewhat.

radarbaby
Posts: 8
Joined: Jul 2009

I am 5+ years out of treatment for anal cancer. So far, so good. I remember that leg pain. I have fibromyalgia but it was different. At about 4 months post, I began doing stretches and walking to get my strength and flexibility back. Start gently and keep at it and it will eventually get better.

MrsMurphy
Posts: 9
Joined: Oct 2008

What wonderful news!!! Savor it. Enjoy it. Celebrate it. I'm so happy for you. "All clear," what a blessing those two words are!

sramirez
Posts: 6
Joined: Nov 2008

How are you doing? I'm still doing OK. Back at both my jobs and working 7 days/week. Guess everyone must think I'm better! Dont' have another dr. visit till Febr. '09.

Kaylyn: How are you doing as well?

S. Ramirez

MrsMurphy
Posts: 9
Joined: Oct 2008

Well, it's so nice to hear from you, Ms. Ramirez. I'm glad to hear that you are doing well. Isn't the old saying so true, "If you have your health you have everything"?

I went to the dr. yesterday for a consultation and scheduled my colonoscopy, for X-mas eve -- How lovely. I'm feeling kind of bloated, gassy, my stomach hurts a bit and I'm just not feeling quite right. Those nasty hemmomroids are back and they are awful. I haven't told anyone in my family that. I just told them it's just part of follow-up care, don't want to worry anyone until I know there's something to worry about. But just the same I'm scared. What if it's back? What if it's worse than before? I don't have insurance. If I have to have that horrid treatment again how am I going to pay my rent or buy groceries? Will I even survive a second round of cancer treatment? What will happen to my daughter if I don't survive. Why am I torturing myself with these questions? Oh, cancer sucks. It never really goes away.

Okay. I'm done venting my anxiety on all you lovely ladies. Now I'll get back to being positive and upbeat. I will hold tight to my faith, giving up to God that which I have no control over, keep busy, smile often, help others, and remain ever thankful for all that I do have. What else can we do?

zjrosenthal
Posts: 45
Joined: Dec 2008

Hi all, this is my first posting here. i was diagnosed with anal cancer last June, went thru radio/chemo in August/September at Mem Sloan Kettering in NYC. What a wonderful place, all the staff so skilled and supportive. I just had my 3 month post treatmetn exam and the surgeon found only scar tissue so I seem to be in good shape. I am hoping for a cure and to avoid the surgery. I go back for my next exam in March and it hasn't all quite sunk in yet that I might have beaten this thing. Is there anything I can do to help avoid a relapse? Treatment was pretty brutal but if it saved my life it is more than worth it. Wishing you all a very blessed holiday and a healthy new year.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Hello, all,
I was diagnosed with mucousal melanoma in the anal-rectal region last November; 4 surgeries later, they finally had to do the dreaded colostomy. It was a terrible psychological blow and we tried so hard to avoid it. My surgeon told me during recovery that I could " train" my colon- THE dumbest organ in the body, great. When I healed up, I went to www.uoaa.org, the ostomy association's offical website. The people there are great and there is a discussion board on irrigation that taught me how to actually train my colon. I now where what looks like a band-aid over my stoma and lead a very normal' albeit still cancerous, life. If the worst case scenario ever becomes reality, try not to panic; If you learn to irrigate, which takes anywhere from 1/2 to 1 hour a day, you can live bag-free and still wear all of your normal clothes. I hope this helps; I had to find this on my own and was very depressed for the first 6 weeks. If I'd had the information first, it would have been a comfort to know that there are even options in the face of colostomy.
Best to you,
Hollyberry

zjrosenthal
Posts: 45
Joined: Dec 2008

I am 3 months post treatment and hubby has been pretty patient during treatment and forced celibacy but I have been trying to resume and get a lot of burning afterward. Am I rushing things? I thought I would be more healed by now. Any advice or some of your own experience with this would be appreciated

waspcracker
Posts: 8
Joined: May 2009

I was glad to read about your good experience at Sloan-Kettering. I'm in Philadelphia but may end up having a colostomy at Sloan; I'm heading there in a few weeks for a third opinion. I was also glad to read the comment about "training your colon" post-colostomy.

I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendously work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

Has anyone else out there experienced this kind of uncertainty? Has anyone else been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. It's a relief to find this network.

harleyrider's picture
harleyrider
Posts: 6
Joined: May 2008

The uncertainty is the hardest part. However, aggressive is my middle name - I certainly wouldn't wait long to decide what to do - be informed - get the opinions but the bottom line is you have to destroy the cells somehow. If it grows it spreads.

Never been to Sloan but if they say resect - resect they are the top of the food chain. Give yourself every chance possible. Good luck and keep us posted!

dlorente11
Posts: 3
Joined: Jul 2009

It is now 2 months later...............hope you found your answer. Please post how and what happened.
I was somewhat confursed by the Doctors waiting on my treatment. My diagnosis is 4th stage anal cancer complicated with a large 14 cm pelvic tumor (reduced by aspiration June 15 '09. After completing the first round of standard radiation & chemo..............the pelvic tumor had to be addressed. The Dr. had a specialist pull 12 oz. of liquid out by needle/cat scan guided surgery. The tumor is reduced but still in my pelvis. I went to the trouble of obtaining a second opinion from a surgeon who recommended going in and possibly removing all organs...........pelvic exoneration "gutting" and then my flesh wound might not heal.......................BE VERY RESPONSIBLE FOR YOUR OWN BODY...........Seek many opinions....this Dr. was so different than my existing surgeon who will go in with a scope first to tell what the tumor is adhereing to and what will be involved in removal. Two totally different approaches............if I choose the gutting Dr. I probably would not live and if so, life would be miserable. Please let me know what you chose.
Best Regards,
Denise

MrsMurphy
Posts: 9
Joined: Oct 2008

Well, Ms. Rosenthal, I personally wasn't ready for relations after three month. As a matter of fact, I've just passed the two-year anniversary of finding out I had cancer (Thanksgiving '06/ended treatment in March of '07). And maybe it's because of the menopause, or perhaps because of some medication I am taking, but I haven't had any interest in that area at all. My husband wasn't very patient and left me a few months after my treatment ended, and I say good riddence to him. But I don't even interest myself, if you know what I mean. Strange, because I was always very active in that area. But, now, without a partner and with many other things on my plate, I'm kind of glad not to have that pressure on. If you are not ready to be intimate in that way, perhaps oral or manual pleasuring might satisfy your spouse for now.

zjrosenthal
Posts: 45
Joined: Dec 2008

Thanks for the personal story Ms. Murphy. there is so litle opportunity to speak of these delicate matters. I am sure I have been rushing things a bit because we both miss the physical intimacy. Personally I prefer the traditional way though hubby would probably be happy with your suggestions. I am hoping that I will heal more and not get so irritated and frustrated. Again thanks for your willingness to share. It has helped and I am so sorry that your spouse chose not to stay with such a lovely person. So sad for him.

MrsMurphy
Posts: 9
Joined: Oct 2008

Ms. Rosenthal,

My doctor told me that it can take up to a year and sometimes longer for the body to recouperate from the trauma of cancer treatment. Be easy on yourself.

zjrosenthal
Posts: 45
Joined: Dec 2008

Thanks for the comments. It is good to know that I am "normal" in my recovery and not just being a baby. I tend to be a bit hard on myself.

Sandra C
Posts: 5
Joined: Apr 2009

I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?

dasspears
Posts: 233
Joined: Feb 2009

I was diagnosed with anal cancer in 11/07 - underwent 6 weeks of radiation and 2 rounds of chemo (5FU & Cisplatin). Chemo made me nauseated and I developed anemia so I had 2 transfusions plus injections of epogen. Lost my hair - had diarrhea forever (it seemed)and of course experienced the burns and damage to my vaginal and anal area. My radiation onc was very careful to list all the possible effects before we began radiation. I remember thinking at the time, who cares - let's get this going and kill the cancer! I use dilators and estraiol like you and it's getting better. I have still have issues with my digestion - I don't tolerate raw foods too well. I have to take miralax and fiber daily or I develop an anal fissure. My colorectal surgeon told me to be patient that it can take two years to fully heal so I'm just taking it a day at a time. I'm currently NED so I'm pretty happy in that regard.

Just hang it there...

Sandra C
Posts: 5
Joined: Apr 2009

Thanks for the encouragement and sharing your info. I too am very thankful to have the cancer gone. I continue to be patient about the healing, it is a very slow process but I can see a progressive healing.

zjrosenthal
Posts: 45
Joined: Dec 2008

Havent been here for awhile but I am still healing and so far, thank God no reoccurance. I also am using dialator 2x a week, estogen cream and vagifem tablets. I am also using a moisturizer called Liquibeads 2x a week and that is helping. Other than some fear about HPV relations with hubby are getting better and less irritating. I still have some bowel incontinence.

lisavaughan
Posts: 7
Joined: May 2009

Wow....are you lucky. I was diagnosed with a tumor the size of a tennis ball in my anus. No metastasized. They went after it aggressively with 42 rounds of radiation and 3 rounds of chemo (portable chemo bag worn for 5 consecutive days). Biopsies under anesthesia every two months for two years; couldn't find any cancer. To make a long story short...scar tissue so bad my colostomy is now permanent. Anus/rectum is damaged beyond repair. Damaged my vagina and the scar tissue narrowed it closed. At 39 years old I'll never have sex again. Put me in menopause and I was recently diagnosed with severe osteoporosis as a result of the radiation. Three years later I'm cancer free. My skin is still dry beyond belief but otherwise I feel great. Besides the colostomy, the only surgery I had was to remove part of my upper intestines and part of my colon which resulted in an ileostomy. Ileostomy was reversed and they reattached the colostomy. The radiation melted the loop together and caused a blockage which resulted in gangrene. Almost killed me. Spent 4 months in the hospital b/c I couldn't absorb nutrients and the dehydration caused kidney failure as well as heart failure. I almost starved to death even with optimental running constantly thru my nose feeding tube. At 5' 2" I weighed 83 lbs. I just recently had a colonoscopy thru my colostomy and additional biopsies of my anus/rectum. All looked good.

Three years later I now weigh 113 lbs. My life has been changed dramatically but I'm alive and feeling pretty damn good....considering. How did my gyno miss it each year. I didn't really start experiencing any pain until 6 months prior to my diagnosis. I slipped on the bathroom floor and just thought I bruised my tailbone. My husband started noticing an unusual tightness in my vagina while having sex and credited himself. It wasn't until he notice my appearance did I finally go get checked out.

Lady J
Posts: 1
Joined: Aug 2009

I noticed this was an April posting. I just joined today. I completed my treatment (2 rounds of Chemo and 25 rounds of Radiation) in July of 2008. I experienced much of the same as what I see shared here. I am currently scheduled to have vaginal reconstruction surgery to help rebuild the walls of my vagina as well as to remove scar tissue deep within the vaginal cavity. The way the doctor explained it, he will inject estrogen to help thicken the walls, then he will input a dilator that will remain for about two weeks. He will then provide me with a removable dilator that I will need to insert and remove routinely. Has anyone under gone this surgical procedure and can you tell me what to expect? I know there may already be posts out there with this information, if so would you point me in the right direction.

lisavaughan
Posts: 7
Joined: May 2009

Had a tennis ball size tumor in my anus. Immediately had surgery for a colostomy. Told it would be removed in three months following my treatment. Had 42 rounds of radiation and carried a mobile bag of chemo for five consecutive days for three times during the two and 1/2 months of treatment. Scar tissue so bad I was told my colostomy would be with me forever. Scar tissue damaged my vagina so bad I can never have sex again. At 39 years old this was devastating news. The radiation also destroyed my cervix. It put me in menopause and I now have severe osteoporosis. Caused gangrene in my upper intestines and my colon. Had surgery to remove part of both.

Three years later (diagnosed in May, 2006) and I'm cancer free but not without some consequences. I feel great otherwise. I could tell you things that would curl your toes. Because my tumor was so big they went after it aggressively and I paid the price with my body. My skin all over is still dry. I have another appointment of June 4th, 2009 with my oncologist....wish me luck.

Remember....squamous cell anal cancer rarely comes back. Compared to non-hodgkins disease. Very curable even in late stages unless it metastasizes. We're going to be okay.

dasspears
Posts: 233
Joined: Feb 2009

Ah, so your ob-gyn missed yours too? Mine told me it was "probably" a hemorrhoid and when it began bleeding even more, I went to a colorectal surgeon. Mine was not tennis ball size but still had to be removed. Only damage is to my vagina because of the radiation. I'm using dilators and estrogen cream to try and re-strech that area. Have made improvements but then I got a urinary tract infection.

I am 16 months out of treatment and my next appt is 6/5. I'll be thinking of you!

zjrosenthal
Posts: 45
Joined: Dec 2008

From what I have been reading here, I am doing remarkably well. I had stage 2-3 anal cancer and was treated last fall at Mem Sloan Kettering. They were wonderful and are still following me for the next few years. The last "big exam" by the surgeon showed only scar tissue thank God and I havent got another appointment until July. I feel for you ladies that have such permanent damage. I too wonder why my GYN didn't pick this up sooner as I am very diligent about getting my yearly exams. I guess since this is a rare cancer they dont usually think of it. My dialator, lubricants, moisturizers and estrogen cream seem to be keeping me fairly good and though the treatment (radio and chemo) were brutal, I am grateful for the result. Some bowel incontinence seems to be the only lasting side effect.

dasspears
Posts: 233
Joined: Feb 2009

I noticed you are using Liquibeadsx2. Is that silicone based? I just bought a silicone based lubricant because someone told me it might work better than water based. What are your thoughts?

Thank you,

zjrosenthal
Posts: 45
Joined: Dec 2008

Yes they are silicone based and are considered a moisturizer rather than a lubricant. Replens is another moisturizer not silicone based. These differ from the water based lubricants as they stay longer somewhat like using hand lotion on chapped external skin.

dasspears
Posts: 233
Joined: Feb 2009

I just bought some and I like it much better!

zjrosenthal
Posts: 45
Joined: Dec 2008

Moisturizers such as liquibeads and replens are used to keep the inside of the vagina and the outer tissues from drying and chapping. Lubricants like KY jelly are more for use during insertion of dialators and for intercourse. They are water based and short term. My doctor also told me that many of her patients have had success using vitamin E capsules. They are to be pierced with a needle to release the contents and inserted into the vagina and are much less costly than the moisturizers. Please remove the needle before inserting! I guess it is best to see what works for you by trial and error.

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