Hi all - treatment finished!

Adam26

Hi guys,

Just thought I would let you know, my mum finished her 5.5 weeks of treatment on Wednesday just gone. She actually managed to go for a 5 minute walk this afternoon! She's getting bored with not being able to do her normal things, anxious about whether the treatment has worked and fed up with having to rush to the toilet! .... But she's decidedly better for not having to go to the hospital every day : )

Does anyone know, without getting ahead of myself, what kind of procedure happens for the 3 monthly check ups? I ask because next year we are hoping to move abroad, which would mean flying back every 3 months, as she wants to keep the same oncologist and doctors etc. Do the tests get done in just a day or are we talking days or even weeks? If they last weeks then we might need to re-think.

I hope everything is going well for everybody and it was lovely to see some NED scan results that have been posted on the forum recently!

Best wishes to everyone,

Adam

mp327

Adam

It has been my observation in communicating with other anal cancer survivors for the past 6 years that follow-up protocol can vary, depending on the doctor.  The follow-up protocol, as per the guidelines put out by the National Comprehensive Cancer Network, state that for cases where there is complete remission, every 3 to 6 months, the following should be done:  Digital Rectal Exam, Anoscopy, Inguinal Node Palpation.  In cases of T3 or T4 tumors or positive inguinal nodes, chest/abdominal/pelvic imaging (CT) annually for 3 years is recommended.  If CT is done, it can be scheduled on the same day as the physical exam, so there would be no need for more than one day, IMO.  I hope this answers your question.

It sounds like your mom has come through her treatment in pretty good shape and I hope she will make a quick recovery.  The walking will be good for her, so I hope she continues to do that.  Soon, she will be seeing real improvements.  I wish her all the very best!

Martha

jcruz

Adam

Thanks for letting us know your mother finished treatment and is on her way to recovering.  I so remember my first walk around the block with my daughter.  It was exhausting but I felt so good that I could do something "normal".  

I wish your mum well as she heals and moves on.  And I want to say again how lucky she is to have such a loving and caring son.

Janet

Ouch_Ouch_Ouch

mp327 said:

Adam

It has been my observation in communicating with other anal cancer survivors for the past 6 years that follow-up protocol can vary, depending on the doctor.  The follow-up protocol, as per the guidelines put out by the National Comprehensive Cancer Network, state that for cases where there is complete remission, every 3 to 6 months, the following should be done:  Digital Rectal Exam, Anoscopy, Inguinal Node Palpation.  In cases of T3 or T4 tumors or positive inguinal nodes, chest/abdominal/pelvic imaging (CT) annually for 3 years is recommended.  If CT is done, it can be scheduled on the same day as the physical exam, so there would be no need for more than one day, IMO.  I hope this answers your question.

It sounds like your mom has come through her treatment in pretty good shape and I hope she will make a quick recovery.  The walking will be good for her, so I hope she continues to do that.  Soon, she will be seeing real improvements.  I wish her all the very best!

Martha

Not so fast here, mp327.

CT results take days to get where I live. Unless the oncologist or radiation oncologist is trained to read CT scans and can somehow readily get to the films on the same day, then Adam's Mum may need to wait days between the scan and the office visit.   >_<

mp327

Ouch_Ouch_Ouch said:

Not so fast here, mp327.

CT results take days to get where I live. Unless the oncologist or radiation oncologist is trained to read CT scans and can somehow readily get to the films on the same day, then Adam's Mum may need to wait days between the scan and the office visit.   >_<

Ouch

Sorry, I must admit that I am spoiled, as I always get my results on the same day.  However, if Adam and his mother have to fly to the location where all the tests will be done, if I were them, I would certainly request that the doctors get the results STAT or at least by the next day.  To me, it would be worth a try.

Ouch_Ouch_Ouch

Hello, Adam & Adam's Mum.......

I only recently had my first Big Three Month CT Scan and my first Big Three Month 'Scoping. I don't know what my particular doctors will suggest for the future as I haven't seen them yet to find out what it all means.

However, for the immediate post-treatment period:

* The first 1-1/2 to 2 months after treatment stopped were not great for me. I could barely move from the couch/sofa/setee ("lounge" in England?). I lost more weight instead of gaining it. I had little to no appetitie and still get ocasional nausea even now. I lived on a supplemental drink we have here in the USA called "Boost". My eating started to improve by about 2 months after treatment when I actually began to get hungry at times. By 3 months, everything seems to smell like it should again and the foul taste is gone from my mouth.

* The anal pain was terrible whenever I passed a bowel movement. It's still not gone, though not as bad (it's only like paper cuts now compared to the previous razor blades). I had bulky stools. It's painful passing all that stuff and caused me to have intermittent vaso-vagal episodes in addition to the pain. A new friend, who had anal cancer 6 years ago, advised me to try a "low residue diet". Ingested fiber would be no more than 15 grams per day, less if possible. It's a rather white, bland diet that's not balanced without great care, so a Registered Dietician should be consulted. A low residue diet is highly digestible, reduces the amount of waste passed, and allows the intestines (and one's bumper) to rest. Sources of information for the diet can be found at these sites, and others. Each version seems to stress different aspects, so reading through several of them can be helpful:

 American Cancer Society - http://www.cancer.org/treatment/survivorshipduringandaftertreatment/nutritionforpeoplewithcancer/low-fiber-foods

Northwestern Memorial Hospital - http://www.nmh.org/ccurl/84/948/lowfiber-diet07.pdf

University of Virginia - http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf

University of Pittsburgh Medical Centers - http://www.upmc.com/patients-visitors/education/nutrition/Pages/low-residue-low-fiber-diet.aspx

(After the 'scoping, though, I had such exquisite pain with bowel movements that I stopped eating again for nearly a week. I am now back to a low-residue diet.)

* I use some very lush wipes for my posterior that I learned about when I was hospitalized: Shield Barrier Cream Cloths by Sage Products. They are large and can easily be cut into 4 pieces, each the size of a square of US toilet tissue, but much more efficient. They are like rectangular clouds!!! Soooo soothing. They are expensive, but irreplaceable to me. I carry a pack with me at all times. I don't know if you can order them from England, however: http://www.sageproducts.com/products/incontinence-care/comfortshield.cfm

I bought them here: http://www.amazon.com/Comfort®-Shield-Incontinence-Barrier-Cloths/dp/B006GQOJMW/ref=pd_sim_hpc_4/186-7231321-2664615?ie=UTF8&amp;refRID=17ZDTQ8RHW4SEE0KEJM2

[NOTE: In the three cloths per pack size, the cloths are slightly smaller.] [EXTRA NOTE: They are not flushable. Too thick and strong.]

* Initially, I was frequently incontinent of stool if I didn't immediately sprint to the bathroom. Although I am still troubled at times, at 3 months it has diminished. However, in order to always be prepared, my pocketbook has taken on the aspect of a diaper bag now.

* I took physical therapy specifically designed for cancer patients, which helped a lot. I went from feeling like a limp, wobbly noodle always dropping things to feeling stronger; I'm now able to drive again without trouble. I still tire easily and understand that it can take a year or more for that to diminish. I also have a slight cognitive deficiet from so-called "chemo-brain". I am still getting therapy for that. Here are some American Cancer Society articles on that condition: http://www.cancer.org/search/index?QueryText=chemo-brain

I wish that once the treatment stops, that sleeping for about two solid weeks would make you all better, but it does not. Chemotherapy and radiation keep working for months after treatment ends (that's why you have to wait about 3 months for the first follow-up scan and 'scoping). And their side-effects can become permanent in some people, for whom my heart breaks. Fingers crossed that Mum will not be one of them.

sandysp

Flying

Adam,

I am so happy for you and your mother that she has finished treatment.

This next year, make sure your mom pays attention to whether or not her legs have pain and/or swelling. 

I have pelvic lymphaedema. We believe I may have always had it or at least had been suffering from it for quite some time. Some of it was the cancer in the groin lymph nodes and the iliac nodes and some of it was likely from the treatment.

Flying is very difficult for anyone sufferring from lymphaedema, even with the garments they make for containment. People who get lymphaedema from cancer are advised to not fly or only fly first class with reclining seats that lift your legs up, taking care to get up and walk around every twenty or so minutes.

I limit my flying to 2.5 hour flights, if I have to fly. Except, I have flown to and from California and did alright when my mother in law passed away. But I am not cocky. Lymphoedema is staged like cancer. No one wants to go from stage 1 to stage 2 as there is a huge difference. 

I am very lucky to have had mine diagnosed properly by the cancer rehabilitative medicine professionals at Memorial Sloan Kettering Cancer Center. They help me order my garments and educated me in self care. If I feel I am slipping in keeping it under control, I can go back there for more lymphatic drainage.

If overseas means to Europe. Actually, I have heard Europe has even better care for Lymphedema than USA. The garments I wear are made from an Italian fabric. 

Just check on this before planning a life with a lot of air travel. I had a great deal of pain in my legs and now it is gone, thanks to learning how to manage lymphedema. 

All the best,

Sandy

qv62

Adam26

Congrats to your mum, I hope the healing goes well. My toughest part of recovery was after treatment ended. As for the protocol, as others have mentioned it does vary. My 3 month post treatment scan was an MRI was on a Friday if my chemo brain serves me correctly and when I saw the oncologist on Monday she handed me the results, as for the scope, I was not healed enough on my visit so it has been rescheduled and yet to come which will be 4 and a half months post treatment when it happens. I can understand how your mum has gotten attached to those who treated her, I saw my radiologist last week about 15 min from home and now that she is moving my next visit with her is about an hour and a half from home. Friends don't understand why I just don't switch over to her replacement here but it is a very personal choice.

Adam26

Hi all, 
Thank you for your

Hi all, 

Thank you for your replies.

We are 2 and a half weeks post treatment and my mum is up and about and she is very pleased with her progress, she went food shopping on Friday, walked the dogs this morning, she's still walking with a bit of a wobble but otherwise she's fine.

To Jcruz, thank you for sahing that, I am the lucky one, as my mum supported me and looked after me for 26 years so being there for her now is the least I can do!!

Ouch ouch ouch, glad to hear of your good results!! We call it a couch or settee in the UK but the actual room itself where people sit and watch tv, have dinner etc is mainly called the 'front room' (even though it's not always at the front of the house!) or just the 'lounge'.

To Martha, I think getting the results asap after the test is a great thing, as the anxiety must be incredible. I think we'll look at getting the scans done privately as it should mean the results come back quicker and will be worth the extra money. 

To Sandysp, I'm sorry that you have that condition and I hope it's manageable. We are thinking specifically of moving to Barcelona which is about a 2 hour flight from the UK, we've had our hearts set on moving for a long time, so hopefully we will still be in a position to do that after the scan results.

Does anybody know what happens in the initial first appointment with the oncologist, prior to the MRI? My mum has this next week, which will be 9 weeks post-treatment. What do they say and do etc?

I'm glad to see more NED posts since I was last online. I hope everyone is well and enjoying life.

mp327

Adam26 said:

Hi all, 
Thank you for your

Hi all, 

Thank you for your replies.

We are 2 and a half weeks post treatment and my mum is up and about and she is very pleased with her progress, she went food shopping on Friday, walked the dogs this morning, she's still walking with a bit of a wobble but otherwise she's fine.

To Jcruz, thank you for sahing that, I am the lucky one, as my mum supported me and looked after me for 26 years so being there for her now is the least I can do!!

Ouch ouch ouch, glad to hear of your good results!! We call it a couch or settee in the UK but the actual room itself where people sit and watch tv, have dinner etc is mainly called the 'front room' (even though it's not always at the front of the house!) or just the 'lounge'.

To Martha, I think getting the results asap after the test is a great thing, as the anxiety must be incredible. I think we'll look at getting the scans done privately as it should mean the results come back quicker and will be worth the extra money. 

To Sandysp, I'm sorry that you have that condition and I hope it's manageable. We are thinking specifically of moving to Barcelona which is about a 2 hour flight from the UK, we've had our hearts set on moving for a long time, so hopefully we will still be in a position to do that after the scan results.

Does anybody know what happens in the initial first appointment with the oncologist, prior to the MRI? My mum has this next week, which will be 9 weeks post-treatment. What do they say and do etc?

I'm glad to see more NED posts since I was last online. I hope everyone is well and enjoying life.

Adam26

I am so glad to hear from you and it's really good to hear that your mom is feeling much better and on the road to recovery.  It may take some time for her to be feeling back to normal, but it sounds like she's well on her way!  I wish her all the best and hope she will keep moving forward to good health.

As for what her upcoming initial post-treatment appt. with her oncologist, I'm not sure what all will be done.  However, he will probably do blood work and a physical exam, perhaps including a digital rectal exam.  My first post-treatment DRE was done by my colorectal doctor at 6 weeks post-treatment.  I'm happy to say that it went well and was not painful, perhaps just a little uncomfortable.  I hope the appt. will go well for your mom and she will get all good news from the doctor.

Please let us know how it goes with your mom's recovery.  I think she's going to be just fine with a little patience.  God bless you for being such a wonderful caregiver to her.  I hope your plans to move to Barcelona will all work--how exciting!  Take care.

Martha 

Ouch_Ouch_Ouch

Adam26 said:

Hi all, 
Thank you for your

Hi all, 

Thank you for your replies.

We are 2 and a half weeks post treatment and my mum is up and about and she is very pleased with her progress, she went food shopping on Friday, walked the dogs this morning, she's still walking with a bit of a wobble but otherwise she's fine.

To Jcruz, thank you for sahing that, I am the lucky one, as my mum supported me and looked after me for 26 years so being there for her now is the least I can do!!

Ouch ouch ouch, glad to hear of your good results!! We call it a couch or settee in the UK but the actual room itself where people sit and watch tv, have dinner etc is mainly called the 'front room' (even though it's not always at the front of the house!) or just the 'lounge'.

To Martha, I think getting the results asap after the test is a great thing, as the anxiety must be incredible. I think we'll look at getting the scans done privately as it should mean the results come back quicker and will be worth the extra money. 

To Sandysp, I'm sorry that you have that condition and I hope it's manageable. We are thinking specifically of moving to Barcelona which is about a 2 hour flight from the UK, we've had our hearts set on moving for a long time, so hopefully we will still be in a position to do that after the scan results.

Does anybody know what happens in the initial first appointment with the oncologist, prior to the MRI? My mum has this next week, which will be 9 weeks post-treatment. What do they say and do etc?

I'm glad to see more NED posts since I was last online. I hope everyone is well and enjoying life.

Thanks for the English lesson....

Adam26 - When I heard one of the Ponds talk to the 11th Doctor about their "lounge", I thought they meant the couch/sofa/settee as they were all sitting on one watching TV.....oops, telly. Perhaps Doctor Who should have subtitles in American!

I am relieved for your Mum that she is doing so well so fast! Tell her not to over-do it, though as rest is still important.

Barcelona sounds wonderful. Don't forget the sunblock and send us photos of all that gorgeous architecture.

Virtual hugs to you both!

Adam26

Haha, it would be impossible

Haha, it would be impossible to sit on a lounge in the UK!! They definitely need translations into American, when i was in the States last year, every now and then, I would say something and they wouldn't understand what I had said!!

Thanks both for your replies, my mum really likes Barcelona as do I, hopefully she will be able to realise her dreams and ambitions before long! Not an easy journey though!