From the UK, expecting results soon

Hey,
I'm from the U.K

Hey,

I'm from the U.K too!

I'm sorry to hear about the prognosis they gave you, although from reading this site I've seen people who have survived stage 4 anal cancer and are leading normal lives again.

My mum is recovering from chemo/radiotherapy and she also has stiffness, so I imagine that's a completely normal side-affect you are experiencing.

As for the potential of a colostomy bag, there are people on this forum who have them and would no doubt encourage you to go through the process that results in you having one too, if that's what it takes for you to get better. 

Don't lose hope, this cancer is very sensitive to the treatment they give you.

Best wishes,

Adam

mp327 said:

Didiabolical

I'm glad you have found this site and that it's made you feel less alone in this fight.  I'm very sorry to hear that your doctors have given you a poor prognosis, but I hope that your upcoming scans will show that your cancer is gone and prove your doctors wrong. 

As for your thoughts about having to undergo surgery and have a colostomy, I can understand how you feel.  I've run that scenario over and over in my head many times and I must be honest, it scares the hell out of me and I'm not sure I could do it.  That said, I know many people, including some on this site, who live with ostomies and do just fine, once they go through a period of adjustment.  I pray that I'll never be faced with making that decision, but of course, cancer has a mind of its own and none of us knows when our situation might change. 

I wish you all the very best and hope that your scans will show a good response to your treatment.  Please come here any time prior to your scans to vent or express your feelings.  This is a great group of people and we are very supportive of each other.  We will be here for you!  Take care.

Martha

another one from UK

Hi there,

I am sorry that you too had to find this site, but as you have found already, there is a fantastic support base. I am also on the Macmillan site (uk) which also has an anal cancer group. 

There is a lady on this site who was stage 4 when diagnosed & she continues to do well some years after treatment.  I don't know what stage you were at when diagnosed, but hope that gives you some hope.

As for waiting for scan results & appointments, it is an anxious time as I think we would all agree. So much depends on them. 

As far as a colostomy, I know of a few people on both sites who have needed one either at commencement of treatment, or subsequently. A scarey prospect, but doable. I know I am speaking without qualification, but from what I see, people adjust & find a way of accomodating their sidekick. 

I will be thinking of you & hoping for the best outcome

Liz

Life.

I'm sorry to meet you under these circumstances and feel badly for what you've been through and may possibly face in the future.

I was diagnosed with stage III-a or III-b, cancer and received the mitocycin, 5-FU, radiation treatment. I finished on July 9th. I had a backache for months afterwards, as well as lower abdominal pain and anal pain. MD said it was due to radiation injuring the connective tissue around my colon making it inflexible. I had a course of physical therapy designed specifically for cancer patients - it helped me regain strength, stamina, and control pain. I had my first 3 month follow-up in October. There was no evidence of [cancer] disease (NED), though I have inflammation, parakeratosis, and dysplasia of my anal canal. However, we all worry about cancer being missed on the scans or about the disease's recurrence. That is normal and extremely human.

I cannot speak from the experience of having an ostomy myself, only as a former RN who has had patients with various types. One was a 17 year old girl who had such severe abdominal pain that she was brought to the emergency department of a small rural hospital. While she was worked up for a tubal pregnancy, her neglected and inflammed appendix quietly burst. She was transferred to us as her abdominal cavity was severely damaged which lead to her colostomy. She did very well and kept up an accepting attitude.

If it comes to that for you, an ostomy nurse will help you chose supplies that work for you because there are many options. Once under good control, you may NOT have to wear a bag all the time. A support group, either face-to-face or online, can offer more tips on adjustment. Ostomy surgery is not anyone's goal, but if that is what's in your stars, as posters say above, it will just become your new normal.

We all have curiosity and want to see what will happen next in life, sports, news, arts, science, whatever - don't give up your passport to life due to a relatively minor thing like an ostomy. Your family will be grateful to you for chosing life and staying with them.

Didiabolical said:

Thank you for your support

Thanks everyone for your really useful words of support and encouragement - it really helps to hear other's stories and find that people do survive this disease. I am stage 3a i think (T3N1?) but my oncologist gave only a 20% chance that my treatment would work. I'm not sure why this percentage is so low as, having researched the internet thoroughly, I cannot find any similar statistics. I intend to ask him when I see him on the 4th.

Having said that I was symptom free last time I posted, I had really bad diarrhoea last night and this morning - literally running out of me (too much info?). I'm hoping it's a tummy bug rather than anything more sinister....

anyway, once again, thanks for taking the time to reply and I'll keep you updated with my scan results

 

Di

Kindred spirits

Having been through the treatment and being told that it didn't work must be devastating, and I cannot imagine.  I sincerely hope that you get more encouraging news soon.  

Also, I sit here with my computer in the bathroom, as I spend so much time in here - it helps to have a distraction.  I was rudely awakened by a "hurry" call to the bathroom (didn't quite make it) at 4:30 a.m.  I have had this happen a couple of times before.  I am just about exactly one year post treatment.  I have more difficulty with diarhhea now than 6 months ago.  I know certain things set me off, but sometimes it just seems to happen for no apparent reason.  My point of all this TMI is I would not suspect anything more sinister.  It's likely just side effects from this treatment.

I'll be thinking of you and praying for you as you navigate through your options.

Best to you,

Judy

Welcome UK

I just found this site too and I think it will be helpful. I am 59 and went through chemo and radiation only to find it metastizied to my liver and lungs and have doubled in size and number. I was so sick with the first chemo, I weighed 106, and was in the hospital a couple times because I was dehydrated and white cell count was next to nill. The only option I have is a horrible chemo treatment that will not heal me and I will be sick for 4 months only to maybe get a year or two.  I have decided to let nature take its course and have been given 6-7 months and honey, I'm going to squeeze every bit of life out of every day.  I don't want my gradkids to remember me bald and 80 pds. I want to still "slay" as my granddaughter says, all of the other grandmas.  She said that meant I didn't look like and grandma. I hope you get better. Thoughts and prayers for my UK friend,.

hogchick said:

Welcome UK

I just found this site too and I think it will be helpful. I am 59 and went through chemo and radiation only to find it metastizied to my liver and lungs and have doubled in size and number. I was so sick with the first chemo, I weighed 106, and was in the hospital a couple times because I was dehydrated and white cell count was next to nill. The only option I have is a horrible chemo treatment that will not heal me and I will be sick for 4 months only to maybe get a year or two.  I have decided to let nature take its course and have been given 6-7 months and honey, I'm going to squeeze every bit of life out of every day.  I don't want my gradkids to remember me bald and 80 pds. I want to still "slay" as my granddaughter says, all of the other grandmas.  She said that meant I didn't look like and grandma. I hope you get better. Thoughts and prayers for my UK friend,.

hogchick

I'm very sorry to hear that your treatment was not successful.  I think all of us have thought about the "what ifs," including what we would do if the initial treatment did not work.  I, like you, would most likely decide to just go out with a bang, not a wimper caused by treatment that would only prolong the inevitable.  Still, I am very sad that you must face this.  Your grandchildren obviously think you are pretty awesome and so do I.  I send you my thoughts and prayers.

Hey, I hope you don't mind me
Hey, I hope you don't mind me asking, but it's late as I write this and am wondering if I've missed something: Some people have said they are sorry to hear your treatment didn't work, but it says in your original post that you receive your results on Feb 4th?

There are lots of people who have survived stage 3a anal cancer and there's a big difference between waiting for your results and being told the treatment hasn't worked!

Well that's already a lot

Well that's already a lot more positive.

If you read through the pages you'll see plenty of people have had stage 3a anal cancer and survived.