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I really need some HELP

dewaldj
Posts: 5
Joined: Oct 2007

I am an Anal Cancer Survivor. Short history - I was diagnosed in Feb 2006 with Stage 3b Anal Cancer with a fistual through my vaginal cavity, which was inoperable. Treatments included chemo and radiation. Unfortunately, If there was a side effect - i.e. infection, alergy to medications, etc. I got it. Spent most of 2 years in the hospital. The fistual wouldn't heal, went through corrective surgery, didn't work. Wore a colostomy bag for 9 months until the fistual healed. I've had 7 intestinal blockages, my gallbladder failed and had to be removed, my thyroid stopped working and now I'm on medications for that, my right kidney has stopped working and due to the radiation I'm menopausal which I take hormones. My insides are all scar tissued together, my cervix is closed tight from scar tissue. I'm 52 years old and 100 pounds. I've recently lost 20 pounds, which my doctor doesn't seem to be concerned with. My problem is pain, pain that has been with me since before my diagnosis and treatment. I wear a 100 MCG Fentanyl patch and take Hydrocodone tablets for pain but neither of these takes away the pain. I'm am so tired all the time, which my doctor attributes to the pain meds but I think it's more from lack of sleep. I wake up every hour to hour and a half at night mostly to pee. I can't seem to evacuate my bladder anymore, it just trickles out no matter how much I push or how long I sit and wait to finish. I don't have good muscle control of my rectum either, always in fear of having an accident and the pain of having a stool if it's hard is horrible. I break out in tears and sweats. I don't know what's worse the fear and humilation of having an accident or the pain of a hard stool. I was evaluated for a pain pump but decided against it. Just putting up with the pain tires me out. Is there anyone else out there who is going through anything like me and if so do you have any suggestions for me. To tell the truth I am at my wits end, when I wake each morning my first thought is I wish I was dead and I just don't know how much more I can take. If my doctors had told me at the beginning what my life would be like after treatment I honestly think I would have forgone the treatment and just given into the cancer.

dasspears
Posts: 233
Joined: Feb 2009

I'm so sorry you are going through this situation. My cancer was caught at a very early stage so I did not have the same surgery as you. I wish I could offer you some advice. Where is your pain mainly located? I know that pain medicine tends to cause hard stools and constipation. I take Miralax and a stool softener pill every day to keep my stools soft because I will have pain otherwise. Hopefully someone on the board will have more suggestions.

dewaldj
Posts: 5
Joined: Oct 2007

dasspears, my pain is rectal, doesn't matter how I sit I can never be comfortable. I do take stool softners every night if I don't I'm in real trouble. Do you have a problem with your intestines twisting when you relieve yourself?

z's picture
z
Posts: 1251
Joined: May 2009

Hello, Sorry for all your side effects of tx. I hope that you will get a second opinon from a dr that will help you get control of all the issues you are having. I don't know if a pain clinic would be helpful. Like the other poster said try to keep your stools soft. I recently started taking 3000 mg of fish oil a day which helps with this. Of course ask your dr. As for your bladder it was probably shrunk. I know they can stretch a bladder. All in All you need a dr that will listen and help you. Please look until you find you, theres no reason you should have to go through all this without some relief. I used to think before my dx, if I'm going to feel this bad I wish I would die. Now after dx and tx I feel better than I have in years. I have also had a secondary lung cancer and have been treated for that. I wish you well, and hope to hear that you have found some help. Lori

dewaldj
Posts: 5
Joined: Oct 2007

Thanks Lori - I have been to the Pain Clinic, they are the ones who wanted to surgically inplant the pain pump. I take Krill (fish) Oil to counteract the Thyroid meds, I'd never had high cholestrol until taking the Thryroid meds, it's suppose to help. I also take 3 stool softeners a day to try and keep the stools soft, they work half the time, if I take anymore than 3 then I lose all control. I have to work so I don't dare take more than 3. I've had a utra-sound and blood work to see whats wrong with the bladder, I'll ask my dr about "stretching" the bladder. Thanks again.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

i am sooo sorry for your pain and everything. i HATE this ype of cancer--- to me it seems to be the hardest one to deal with. i am probably wrong about that but the horrors of trying to deal with all the side effects and pain and etc. seem worse than any other. I know it is not as deadly but.........Please go to urologist who will do a cystoscope on you. ultrasd and bld work is not enough. they look inside bladder. i assume you went to a urologist but if you did not, pls go to one. i kept having bld in urinalysis workup so they did one to be sure no polyps , cancer etc. he saw radiation damage , scar tissue . just a thought. sephie

melbas2
Posts: 108
Joined: Aug 2010

YES!!! That is exactly what I"m going thru. I spend half my day on the toilet trying to pee, and the results are a few drops. But then the diarrea never seems to end, There are some days I go thru 6 pairs of underwear because I can't make it to the toilet in time. I had extreme side effects due to the chemo and radiation. I got thru treatments in August of 2010, they say I"m cancer free, but now my anemia is eating my bone marrow. I, too, would have opted for no treatments and let the cancer do it's job if I'd known that I'd still have all this pain and **** to go thru. I know this doesn't answer any questions for you, but just to let you know you are not alone. Melodie

dewaldj
Posts: 5
Joined: Oct 2007

I know it shouldn't make me feel better but in a strange way it does. Melodie thank you for letting me know I'm not the only one going through these problems/feelings. I have felt so alone, my doctors just pat me on the shoulder and say poor thing, I don't know what more I can do for you and send me out the door. I feel like I'm bothering them.

carlo1024
Posts: 5
Joined: Feb 2011

I can so sympathize with what you are going through. I am 6 years out from diagnosis and have had much the same experience as you and still wish almost every day that I had not survived treatment because the side effects have been just horrendous. As far as the pain aspect of survival goes it becomes very hard to control once you have been on opioids/narcotics for any length of time. If I were you I would find the best colorectal surgeon you can and pursue any options that s/he might present. I ended up with a permanent colostomy, but at least the abdominal and rectal pain is gone. Before you go to the pump I would try methadone. It makes you incredibly sleepy, but your doc can prescribe Provigil to counteract that. I did finally end up with a pump because I suffered from unbearable pain due to osteoradionecrosis. The problem with the pump is that it too becomes ineffective-for me over a very short period of time. It is also expensive. I don't know what kind of health insurance you have but under mine, every time the docs read the pump it was considered out patient surgery and cost me a $100 copay in addition to the office visit copay. Another difficulty is that most pain clinics/anesthesiologists will only service their own pumps, so if you have to switch doctors for any reason, you'll have a hard time convincing the new docs to manage the pump. This happened to me when the doc that placed my pump turned out to be less than sympathetic and I wanted to return to my regular pain docs. I do have one other suggestion and it is one that saved my life when the pain became so unbearable that I was honestly considering suicide. Self refer to MD Anderson if your health insurance will allow it. They are the best in the country in my opinion and are so used to dealing with the complications from cancer that if they can't help, no one can. I wish you the best and hope that your struggles ease as mine have. I don't think I will ever be truly whole again, but life is at least more bearable.

namrecnac
Posts: 1
Joined: Feb 2011

My entire family die regularly from cancers of all types. I've had three, and I survived all of them. I'm not sure why, but there is something which saved me, and although I can't say what it was, I know the process I went through to get to the stage where the cancer simply went away.
A famous man once said, "Of any one thing, ask,--"WHAT IS IT?-- WHAT IS IT'S NATURE?" "WHAT DOES IT DO?" I read and remembered that, and after following his advice, I found out exactly what cancer was, and for the first time saw clearly what cancer DOES, and after that, it was all fairly straightforward and easy. It required discipline, but I stuck to it, and soon I was back to good health. You can get in touch with me if you wish. I can only tell you of MY experiences, and I cannot give you any advice.

ina2525
Posts: 5
Joined: Jul 2009

I am soo sorry to hear about your pain and sugeries. I too am an anal cancer survivor but my side effects are not even worth mentioning. There is a top notch colonrectal surgeon at the Cleveland Clinic, Weston, Florida. His name is Dr. Stephen Wexner and he's one of those Top 100 Surgeons in Florida types. They accept all insuranace, Medicare/Medicaid and even have a sliding fee program.

If anyone can help you, Dr. Wexner can.

Best of luck to you!

chelceyrose
Posts: 6
Joined: Jan 2011

Oh sweetheart - wish I had some words of wisdom. What ticks me off is the docs dont tell you the long term effects of radiation. My tumor was 5 1/2 cm - about the size of a small egg. Surgery was not an option. So chemo and double the radiation. Got radiation burn so bad - treatments were postponed for 2 weeks then resumed. Other than tired - was feeling ok for about a year and then small things started happening. My vagina is now completely closed off - radiation scarring. My anal/rectum is on verge of closing off. The pain is so intense just to have a movement - I vomit every time. Now I am looking at a colostomy in June. I have not had the problems as you have - but trust me - there are others out there in similar situations. What does help is some to talk to who can understand because they are or have been there. When you talk to anyone else - they just havent a clue of what you may be going through. I dont normally do this - but am going to post my e-mail for anyone who needs someone to talk to who was and is still suffering the after effects of cancer and radiation.
My e-mail is: vickihelms2@gmail.com. May God bless everyone here. and please - if you need an understanding hear - feel free to contact me.

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

I appreciate your candidness regarding your long-term side effects of radiation. You completed your treatment just a few months before I completed mine. I'm sorry you are dealing with these issues and that you are facing colostomy surgery. I feel so very blessed, as so far (knock on wood), I have not had too many serious issues. I do have vaginal stenosis, but with regular use of a dilator and estrogen vaginal pills (Vagifem), things are better. My radiation center gave me a long list of things that could possibly result from the radiation, which I had to read and sign. But honestly, I got so frightened as I read on and on, that I just stopped, signed it and handed it back to them. I now wish I had a copy of that release just to see what all it said.

I really am sorry to hear about the anal stenosis. I guess before consenting to surgery, I would get a second opinion and see if there are other procedures that could be done first, but I'm sure you've already done that. I'm curious as to what other options there would be.

I am going to put your e-mail in my address book and send you a message. I can give you information on a couple of sites you may be interested in. Take care.

Martha

mxperry220
Posts: 357
Joined: Mar 2011

I have seen some postings on this site that indicate acupunture has helped manage thier pain. I too am a survivor of anal cancer-27 months out. Fortunately my side effects post treatment have been minimal but bowel movement habits have been a challenge-5-6 per day vs 2-3 before treatment. I am now taking 3 immodiums a day all 3 first thing after first bowel movement in the morning. My radiologist recommended this. He said immodium will not hurt you. I was taking 2 immodiums but still had excessive bowel movements. I have started taking the 3 immodiums since mid March and my bowel movements are averaging about two to three times per day. Also, have found that if I get stressed out my bowel movements are more frequent. Hopefully this helps a litle.

Captain11
Posts: 88
Joined: Apr 2011

I am so sorry to hear of all your pain and discomforts. I too was diagnosed stage 3B, and Thank God, so far I have been cancer free since March 2010. I had 31 days of radiation and 2 weeks of mitomycin and 5Fu going through my port, 96 consecutive hours. After that my scan showed the cancer spread into the nearby lymph nodes, I was treated with cysplatin, 96 consecutive hours every 3 weeks. Get a second, third, fourth opinion if you have to. I got a second opinion after my first rounds of chemo and radiation. My first doctor would not discuss things with me saying stuff like, "oh, you don't need to worry about that now," etc etc. You need to know everything, you do not have a hang nail, you have cancer. Go in with a list of questions and leave a space for each answer. Something about the radiation...it can take its time revealing its side effects. My primary care doctor put it like this: look what happened from the A-bombs in WWII. many people had side effects for a long time. My cysplatin treatments were taking such a toll on me. I could not keep my strength up, lost appetite, couldn't keep my white blood cells up, needed a transfusion, and had the worst mouth sores, I couldn't eat if I wanted to, and I had absolutely no energy. I asked the oncologist if I could spread my treatments out at least a week longer. I figured that the treatments weren't going to do me any good if I had no strength. My second opinion dr agreed with me and scheduled me a week later, in addition, I asked him if my meds were too strong, since I had lost almost 40 pounds since I first started treatments. He took that into consideration and lowered my dosage. It all helped. My problems now are the neuropathy in my hands and feet, I lose my balance from that, and the fecal urgency, for which I take the immodium. I hope some of this helps. I will keep you in my prayers. Please get a second opinion. Being comfortable with the dr is crucial. God bless.

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