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For the Newbies: 95% of Anal cancer patients free from SERIOUS side effects during and after treatment

Phoebesnow
Posts: 447
Joined: Apr 2011

I remember these figures being presented to me at dx. I was really hoping that I would be in the 95% and I was for the first three weeks. I always had hope that things would not get too bad for me, but they did. I got thru it and I am left with some unusual side effects. I don't think that reading this board gave me any symptoms, made me sicker or gave me any side effects. My side effects are due to my reaction to treatment.

My point is is that 95% have no side effects or symptoms, so those people are not on this board. They have moved on. It's like anything, going to a restaurant going on a cruise, if it worked well, you are not going to hear from them, unless it is great, overthetop, or it was a very Negative experience so they have to write about it.

We are the 5% trying to find answers and solutions.

I have a collection of small Svorsky Chrystal figurines. Over the years they have fallen and little bits of them, have ended up in my jewelry box, paws, beaks, a little gold bug. Some people wouldn't display these pieces anymore. I am most fond of these broken figurines as they have more character in my eyes and I smile as I pass them. Now I look upon them even more fondly as they remind me of us.

mxperry220
Posts: 348
Joined: Mar 2011

Thanks for sharing your thoughts. I did not realizie 95% have no side effects or symptoms. I also am not in that 95% but cannot complain due to fact my life was saved as a result of my doctors decisions and care. Baylor Plano in Plano Texas is where my doctors are located. The main side effect I have had is BM issues. Now that I am eating Activia each day it seems to have helped with my BMs.

I am scheduled for my 2 year colonscopy Friday and as usual am a little nervous before my tests. I do not anticipate any new issues because I have been feeling fine. Hopr the best for you.
Mike

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I like your comments about the crystals. I now refer to myself as a "scratch and dent" model, but I still run like a top!

However, I've been on 3 different support sites since my treatment ended in September '09 and judging from my own experience and that of others who have shared on the forums, I have a hard time believing that 95% of people undergoing treatment for anal cancer will not have any side effects, during or after. Also, the word "symptoms" would lead me to think of things such as bleeding, which many people continue to have during and after treatment. I still occasionally have bleeding with BM's, even 3+ years out.

I do agree that many people get past treatment and choose to put everything behind them and stop talking about cancer, so they do not participate on sites such as this. I must say that the further out I get from treatment, the more I understand that. I believe at some point the day will come when I will do the same.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i am not in the 95% and would have loved to be able to read all these hints when i was being treated from march 31 ( large biopsy with stiches trying to remove the entire tumor) 2009 un til end of tx at MD Anderson in July 2009. the anal part posted the month after, i think. i watched the farrah fawcett broadcast trying to grab hints from her of how she handled the pain , the crazy BM's and etc. but she could not show that to the world. I had side effects immediately from chemo (mouth so full of sores that i could not eat or talk with no relief for a week) then the radiation started burning me up after the first week which the docs said was not the usual thing. then i ended up in hospital after the last tx. But the worst is that i am still suffering with side effects---- pain during , after certain BM's, some bleeding when tissue tears, mucous. too many bm's. i am not a grateful survivor. but i am gradually after 2 years and 4 months post tx getting better. I still can not fast walk for exercise due to the pulling on the anus . also , to let you know, i have never smoked ( mom did). have been 115-120 lbs 5ft. 7 inches my whole life and used to be able to exercise. i have never tested positive for HPV in the 38 years of pap smears. sooooo i was sort of healthy before all of this mess. every one is different. i welcome all info. i need it and thank everyone for helping me all the time. trying hard to be grateful for every small step forward. sephie

Phoebesnow
Posts: 447
Joined: Apr 2011

When I would consult with radiologist, onc, techs with my symptoms, everyone had the same response, never saw this before, don't know how to help you. In the front I was burned from above pubic area to mid leg. Open dripping, weeping skin, entire vaginal area was burned inside and out, anus not so bad, but burned. My bladder was burned and I was incontinent, so that the urine dripped on the open burns, I had a uti and diareaah and constant urination drip 24/7. I was out of my mind with pain, I hadn't sleep more than hour in 21 days. They did not give me painkillers or a sleep aid until thanksgiving night when I went to the er and they gave me a morphine drip, They had never seen anyone have a response like this, I was told over and over again, by many health professionals at this facility. At this facility they radiate 130 patients per day. I could not believe them because I had already read the blogs noting some of these side effects. I don't know if they all band together and just decide they will deny everything. They are now finally giving in and admitting that my side effects are due to treatment. My biggest gripe is my loss of balance, for which they offered me a cane. You know what I told them to do with that cane?

Then after all that my tiny 90 year old mother in law goes for radiation to shrink a colon cancer met tumor that is blocking her airway, and she sails thru, no burn, no side effects a little tired one day.

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

Your experience sounds absolutely horrible. While my burns were pretty bad, I did not have anything as severe as yours. It sounds to me that your radiation team was not very well versed on pelvic radiation side effects. Do you know what your total radiation dosage was? And at what point did your side effects turn severe? Just curious. Most people have a bad last couple of weeks, but some people's skin can begin burning much sooner.

I'm very sorry your treatment was so brutal and that you are now dealing with the after effects.

Phoebesnow
Posts: 447
Joined: Apr 2011

Thanks for your empathy. I am pretty sure it was the third week, but can't remember now if the beginning of the third week or the end. looking back now, I realize some serious mistakes were made. When they did the planning, they had me insert a tampon then they made tattoos. after burning my bladder, they did replanning and gave me new tattoos, no tampon. Did this happen to anyone else, tampon and new tattoos? I do not know radiation dosage, I am very thin, but I think you are too as it sounds like many people here are. also I have never tested positive for hpv but still believe that was the cause, but doctors keep insisting no. MY radiation onc is tops in his field, but it is the techs who do the plannning and administer the treatment. I am happy with the tx because I am cured and in the end that is all that really matters. Cured for now anyway, cured forever I hope.

P.s. Just looked at records and by nov15th I was already burned and looking for remedies. What I don't understand is why were they so reluctant to give pain pills, if they knew this kind of suffering was normal with radiation treatment. I still have so many questions about everything. I read several snippets here today that are making me question how my biopsy was obtained, as it was done thru routine colonscopy. I need time to digest this discussion before I can move on to a new topic. Like you MArtha I was diagnosed with Hemis for several years.

Carrol

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I began feeling the burn in the latter part of week 3, but it didn't really get bad until about week 5. As for the tampon, that's a new one to me. I do know that MD Anderson has treated some patients with a dilator inserted during radiation, so this sounds similar. However, the fact that your first planning session was done with a tampon and the 2nd. one was not is bothersome. My total radiation dosage was 54 gy (30 days @ 1.8 gy per treatment). I believe the maximum dosage that can be given is 59 gy. I have never tested positive for HPV, but have had atypical cells on 2 or 3 pap smears, which when repeated, had cleared. However, in September '09, I underwent surgery (anal fulguration) for removal of 3 small anal condyloma, which my surgeon said were caused by HPV.

While I think everyone has some skin issues during this treatment, it is unbelievable to think that a radiation team would not know of any pain meds or creams/lotions that would be helpful in alleviating the pain. I was prescribed Silver Sulfadiazine.

As for how biopsies are obtained, mine was done during my colonocopy.

I'm very glad that you are doing well and I hope NED is in your life forever!

Martha

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

oh, i hurt for you. bless you for all the suffering you went thru. At MD Anderson , they give me pain meds immmediately. however, i did not take them for fear of constipation and the fear of the massive pain of BM. that was stupid but i did not have a clear mind and could not figure out how to handle the constipation and etc. now , i know how to do it but too late. i chose to endure the radiation pain rather than the constipation pain but that is not necessary. i think that if ONE oncologist or ONE oncologyradiologist at MDA would get anal cancer (not wishing that on anyone ) , then we would see a lot more help with this disease. they would figure a lot out and print it . i have one doc here in my small town that had a hard time with prostate cancer and he has read up on anal cancer. he understands, but of course, he was not with me at MD anderson. sephie

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

At MSK in New York I was told that I was handling the treatment better than most patients and I had the usual symptoms we describe, burns, mucous, horribly painful bowel movements after the last chemo and radiation treatments for three or four weeks. I still suffer from inflammation of the soft tissue down my legs and in my feet, which is a type of reaction to the treatment and resulting fatigue as the pain is greater when tired. But at MSK my oncologist gave me morphine and told me to take it every twelve hours. So I can't imagine anyone telling a patient to have this treatment with this cancer without that. Recently I had an asthma attack and the doctor gave me Prednisone. It totally took away the soreness and I felt like a child again. No one should have to suffer the pain this illness causes. That is barbaric. It doesn't hurt those "researchers" who came up with that statistic one bit.

Phoebesnow
Posts: 447
Joined: Apr 2011

After my trip to the er they began to address the burns and the pain. I am allergic to sulphur but was so desperate I tried the silverdyne cream anyway. At first it was ok, but really did not do much except build up in my system and create an allergic reaction. I am also allergic to avocado and they prescribed something else that had avocado oil (I did not read ingredients) and had a reaction to that. In the end I settled with the aquaphor. The best relief was standing in the shower (handheld) and letting the water flow over the burns lightly. Also the saline solution that I would clean the burns with felt like heaven.

I am really concerned now about future patients that my radiation team will be working with. I was so grateful to them, but maybe that is like when people have Stockholm syndrome. After there experience with me I pray that they do not say to the next patient I have never seen this before.

I also have the nerve damage in my legs. This really has improved over the past few months. when I am tired, it will flare up. Sunday night it was so bad I felt nausea.

happy to hear biopsy during colonscopy is ok.

All of my life I had feared chemo but nothing had prepared me for the radiation.

Phoebesnow
Posts: 447
Joined: Apr 2011

I have changed the title. I have done some research since my post, I think this one is more accurate.

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

that between chemo and radiation, radiation is the evil twin. I could do chemo again in a heartbeat.

Phoebesnow
Posts: 447
Joined: Apr 2011

Exactly!

Phoebesnow
Posts: 447
Joined: Apr 2011

I guess I am going to get this story out little by little.

I am home two weeks post treatment and pain from the burns is uncontrollable. I guess they did not believe me, but I showed them. We called and made an appointment with the radioligist. My husband drove me, I wore a short skirt, buck naked underneath. I walked into his office pulled up my skirt, thought he was going to cry. He sent me home with dialuad and a home nurse started coming that day to dress the wounds. I m crying a river as I write this. I stared treatment on 11/1/10 and it feels like yesterday.

AZANNIE
Posts: 371
Joined: Mar 2011

I hope you have relief soon and am sorry you're so miserable! I empathize with you. Two weeks into treatment, I started itching and the radiation nurse said it was too soon for side effects. She was the same one who told me I wouldn't turn red... Anyway, the burns started getting worse about the 5th week. The radiation dr listened to my heart and lungs once a week - wrong end. Never looked at the radiated site until rad. tech called his attention to it, but he said to continue treatment. So a few days later I ended up in the hospital. Wound care nurse prescribed xenaderm ointment and that helped. I almost didn't finish the last 5 treatments...

AZANNIE
Posts: 371
Joined: Mar 2011

I agree!

Phoebesnow
Posts: 447
Joined: Apr 2011

I am fine now. Sorry for all you went thru. I am glad u finished the tx.

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

I was checked weekly by my Radiologist for burns. I am also alergic to Sulfah medication and they told me emphatically not to "try it anyway." They found Radiadres Gel Sheets and a product call Allegiance Wound Cleaner which were soothing products for my burns along with Aquaphor which everyone here agrees is a life saver. Both my Oncologist and my Radiologist checked my skin burns regularly which means they both checked them weekly. The Radiologist had the medicines for the burns and even gave me large quantities of soft gauze to apply the Wound Cleaner which was particularly helpful when the itching started. God bless you. It's okay to complain. You have to be a strong advocate for yourself. Thanks for posting. Fondly, Sandy

Phoebesnow
Posts: 447
Joined: Apr 2011

Thank you so much for your support Sandy and all of you. Apparently I still need support. I never discussed with anyone what I went thru until I came here. My husband was here with me every day and listened to all my complaints. He never got short with me. I really think he is an angel sent from God. I have been thru a lot in my life and I have never been a big talker about myself (but a big talker overall). It feels good to let go of this pain, I feel as if I have taken a shower inside. I feel all fresh and new. Thank you all for your support and empathy, your kindness means the world to me.

Carrol

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I'm glad you have found a soft place to land on this support forum. I think too many times, which I am guilty of myself, we tend to hold things in and not express our feelings, whatever they may be. There is a truly remarkable group of people here who understand each other without question. I'm glad you are feeling better!

Angela_K
Posts: 370
Joined: Jan 2011

My rad onc kept gently telling me that toward the end of treatment, I would experience a lot of "discomfort." My bottom was nicely chapped/raw in the middle of the second week and we think it was a skin reaction to the chemo and not completely due to the radiation. But no, I had no idea that the radiation would be so brutal.

I don't see myself as having any serious side effects at all, and I am so sorry that you are experiencing such pain.

Like Martha, there may come a time that I don't feel a need to participate on this board. But for now, I hope that I can provide some support for those who need it the most. I feel it's like the least I can do for those who share what I call a VSA. (Very special ass.) And it's probably a part of the healing process for me as well.

Love to all,
Angela

7243
Posts: 211
Joined: Feb 2011

Yes ... I agree on all points. I need support from the board and it is so helpful for me to provide support to others ... it is a part of my healing journey. I hurt every time I see the topic "new to this site" ... it takes me back to my early days of diagnosis, that "gut punch feeling I still feel when I hear the stories of "you have anal cancer" ... and I just find I want to reach out and help sooth the pain in some way. We can not take it away from each other ... but we can stand together and that is so powerful for me.

Angela ... I too may not need the board one day and maybe that is our "right of passage" ... to journey on ... however, for now I need you all both to support me and for me to support you.

Carol ... yes, how nice, fresh and new. So happy for your and ... How I long for the feeling of "fresh and new" as well.

love ...

Phoebesnow
Posts: 447
Joined: Apr 2011

Angela you are a most desirable member of this board and someone who can really give hope to the newbies. You are so fortunate to not have any SERIOUS side effects and people need to know that it is possible. You represent the minority here, but really according to the statistics you are the majority.

7243 It is now at the almost year mark that I am starting to feel like the real me. I am so grateful to be healing physically. I am also healing emotionally from it all, but I think that feeling of sheer terror is never that far away these days. I never thought I cared that much for myself as I realized in that moment of dx how much I loved my life. A few months earlier I had said to a fellow surfer that I was afraid of dying because I would miss surfing too much. I came close, as we all did, thank god for dx.

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I was convinced early on in my recovery that my life as I had known it was over--history. I am happy to share with everyone here who may be feeling that same way that it will not be that way at all! I am 3+ years out of treatment now and I would say that at the 2-year mark, I really started to feel like my old self again. I still think about cancer and worry about the possibility of a recurrence--I don't think I'd be human if I didn't. However, it is not in the forefront of my mind like it was in the beginning. The stress eased gradually and soon I was going sometimes for an entire day without thinking about cancer much or at all. Distraction makes for a mind not focused on cancer, so I urge everyone to get involved with things that you enjoy doing. My sometimes cranky bowels do not let me forget what I've been through, but I have learned how to handle this issue, along with a few others, and I don't consider any of them to be problems that disrupt my life.

pjs62
Posts: 95
Joined: Sep 2011

When I went thru radiation, my oncology dr said it'd feel like a sunburn on the inside. That's putting it mildly so to speak! I took alot of cool sitz baths with aveeno. I also used aquaphor to help ease the pain. Still waiting on the healing from a year ago. (& still unable to use a dialator...think that body part is completely closed! ha!)

mp327....
I'm always telling my hubby "I just want my life back!". I get very tired of being sick & dealing with after effects from treatments. And now dealing with 'recurrence' & waiting for my drs to comfirm its all gone (from recent surgery).

Angela....
I do so appriciate all the sharing & caring...it helps to not feel alone on this journey.

AZANNIE
Posts: 371
Joined: Mar 2011

If only the doctors knew what it was like to have a sunburn on the inside...but we made it!

Phoebesnow
Posts: 447
Joined: Apr 2011

You have been thru a lot, more than most of us. My heart really goes out to you. I pray that this last round is the end of your journey and the healing can begin. It is such a sensitive area and does take a long time to heal, inside and out, Even with the side effects I am so happy to be here. I cannot believe how lucky I am to have caught this in time. You will heal. It does take a loooong time and you might not always feel lucky or happy along the way. Keep your head up and focus on the goal. Getting back to you.

Hugs to u pjs62.

Carrol

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