Biopsy results

Adam26 · July 2015

mp327 said:
Adam
I am just going to throw this out there and let you do your own search on this, so here goes. There is a treatment called "Brachytherapy," which involves inserting a radioactive rod into the anal canal to treat anal cancer. I know of one person who had a recurrence who underwent this treatment. I have not communicated with her in a number of years, so I don't know if she is still NED or not, but I know after she received this treatment, her recurrence was gone. I also know another person who received the standard chemo/radiation (external), then received brachytherapy for a short time immediately after the standard protocol was finished. She is also doing well. It might be something to look into and ask your Mom's doctor about. I do not know if it is available where you are and I would not know if it would even be an option for your Mom, based on her specific situation. But I don't think it would hurt to ask about it. For search purposes, I would search "Brachytherapy for Anal Cancer" and see what comes up.

Still sending prayers for you and your Mom!

Martha

Thanks

Hi Martha,

Thanks for this, ideas like this really help, so they're all appreciated.

We will start looking immediately into this Martha. Have you heard of TomoTherapy by the way? It seems that could be another option.

One thing I was thinking, based on my time on this forum is that MD Anderson could be a place to go to for amother opinion. We've already got one referal to the Royal Marsden in London and we are now looking into setting up another with BUPA in London (the only place where they offer TomoTherapy in the U.K). Do you know if it'd be possible to have our doctor send our details to MD Anderson and they give us a consolidation over the phone? If it came down to paying money and flying over to Texas for treatment that avoids taking out the anal sphincter, I know 100% that my mum would do it. I think I'll set up a thread about MD Anderson.

mp327 · July 2015

Adam26 said:
Thanks
Hi Martha,

Thanks for this, ideas like this really help, so they're all appreciated.

We will start looking immediately into this Martha. Have you heard of TomoTherapy by the way? It seems that could be another option.

One thing I was thinking, based on my time on this forum is that MD Anderson could be a place to go to for amother opinion. We've already got one referal to the Royal Marsden in London and we are now looking into setting up another with BUPA in London (the only place where they offer TomoTherapy in the U.K). Do you know if it'd be possible to have our doctor send our details to MD Anderson and they give us a consolidation over the phone? If it came down to paying money and flying over to Texas for treatment that avoids taking out the anal sphincter, I know 100% that my mum would do it. I think I'll set up a thread about MD Anderson.

Adam

I'm not familiar with tomo therapy, although I've heard of it. MD Anderson would be my top choice in the U.S. for a second opinion, specifically with Dr. Catherine Eng. She is, IMO, the top physician in our country for treating anal cancer, especially metastatic or recurrent. I know that MDA does phone consults quite often. It would probably only require sending all of your mom's medical records, all test results, etc, online to MDA for their review. Then possibly your mom's physician could speak with Dr. Eng by phone for consultation. It is certainly worth a try. I will check out your other thread.

Martha

pializ · July 2015

loveyouall said:
Yes your mom will play tennis, swim, walk the dog, travel !
and so much more Adam! If your mom does need surgery, modern medicine is a remarkable thing for the body is so amazing and heals very well especially at 57! Yes, there was discomfort after surgery but not at the place of the stoma for that has no nerve endings. My mom had open surgery, and some other surgery in the area because of the area of the cells by the vaginal area. She had pretty major surgery where they needed to do some reconstruction, but it is the incisions which cause the most discomfort. She also (don't get scared) had a tiny hernia in the hospital so they needed to do surgery again while she was there to insert a mesh so that a hernia would not recur. This was a blessing that she was actually able to have that done while still in hospital. This is why it took her 12 weeks to heal becuase so much was done. I would doubt that your mom will go through all of that! Yes there was discomfort but that is what pain medicine is for and the hospital will make sure she is well supplied. Your mom may have laproscopic surgery which is much less invasive than actual open surgery like my mom had and healing time can be much faster than my moms. Either way, you mom will heal! My mom does wear hers all day with no problems. You would never ever know it!! My mom has bought no new clothing. She had her stoma placed lower down which my mom loves. If the time comes have your mom determine where she will be most comfortable with hers. She will have a stoma nurse and have your mom decide for her own what is best for herself in terms of comfort for clothing. My mom has no issues with the pouch and stoma. There is something called irrigation if your mom choices a few months after surgery. This is where she becomes very regular through irrigating and can wear a cap over the stoma and go on her way (no bag!). Please google irrigation if you want to read more about it. It is for some people and they love it but it is a choice she can make. Your mom will regain a full life absolutely, no matter what!

If the time comes find out how the surgery may be perform.... if it is laproscopic - then the healing time is less vs open surgery. Either way your mom will get through this and resume her wonderful life. As mentioned it is very well worth it!

Again you may ask me anything . Hugs!

Artificial anal sphincter

www.biomedcentral.com/1471-2482/13/45

This is a link for the most recent study I can find. Dated 2013

I looked at NICE guidelines but the most recent guidelines were in 2004, so based on older studies.

I know of someone in the UK who has recently undergone an APR. Very recent so not had an update yet.

I don't know why this is typing weirdly, but possibly due to the link I posted.

Kind regards to you & your Mum

Adam26 · July 2015

pializ said:
Artificial anal sphincter
www.biomedcentral.com/1471-2482/13/45

This is a link for the most recent study I can find. Dated 2013

I looked at NICE guidelines but the most recent guidelines were in 2004, so based on older studies.

I know of someone in the UK who has recently undergone an APR. Very recent so not had an update yet.

I don't know why this is typing weirdly, but possibly due to the link I posted.

Kind regards to you & your Mum

Hi Liz,
Thanks for this!
What

Hi Liz,

Thanks for this!

What is the APR? The colostomy operation or the artificial anal sphincter? We're going for a second and third opinion at the Royal Marsden and also BUPA in London, maybe they could offer something like this if it came to an op?

pializ · July 2015

Adam26 said:
Hi Liz,
Thanks for this!
What
Hi Liz,

Thanks for this!

What is the APR? The colostomy operation or the artificial anal sphincter? We're going for a second and third opinion at the Royal Marsden and also BUPA in London, maybe they could offer something like this if it came to an op?

APR

It's a colostomy with removal of the anus as opposed to a colostomy (What I have come to understand is known as 'Barbie butt'). It is usually used as 'salvage' surgery after a local recurrence of anal cancer I.e. It has come back at the original site of the tumour.

I looked at Tomotherapy, and it has been used for recurrent cancer. I hope you get the answers you need.

mp327 · July 2015

Adam26 said:
Hi Liz,
Thanks for this!
What
Hi Liz,

Thanks for this!

What is the APR? The colostomy operation or the artificial anal sphincter? We're going for a second and third opinion at the Royal Marsden and also BUPA in London, maybe they could offer something like this if it came to an op?

Adam

APR is "Abdominperineal Resection" and is major surgery that involves removal of the anus, rectum and part of the lower colon. The end of the colon is where a stoma is made on the lower left abdomen for the colostomy bag and the wound on the backside is normally closed with a flap of skin taken from a graft.

Adam26 · July 2015

mp327 said:
Adam
APR is "Abdominperineal Resection" and is major surgery that involves removal of the anus, rectum and part of the lower colon. The end of the colon is where a stoma is made on the lower left abdomen for the colostomy bag and the wound on the backside is normally closed with a flap of skin taken from a graft.

Thanks for this.
This is the

Thanks for this.

This is the heartbreaking thing my mum will have to go through if we have no luck with our 2nd/3rd and 4th opinions.

I'm so gutted. Was expecting 8 months NED and to be going on holiday soon and thinking about teaching English in Barcelona or somewhere. Now I'm looking after my depressed mum who still has cancer. It's been nearly 13 months now, I feel so sorry for her. I wish I had a magic wand to make this all better.

eihtak · July 2015

Adam26 said:
Thanks for this.
This is the
Thanks for this.

This is the heartbreaking thing my mum will have to go through if we have no luck with our 2nd/3rd and 4th opinions.

I'm so gutted. Was expecting 8 months NED and to be going on holiday soon and thinking about teaching English in Barcelona or somewhere. Now I'm looking after my depressed mum who still has cancer. It's been nearly 13 months now, I feel so sorry for her. I wish I had a magic wand to make this all better.

Adam26.....

Hi, just thinking about you both and hoping for some good news with your 2nd opinion.

I don't know if you've had time but check out some of the links I posted on the other thread (about forums/websites).

Stay strong.......

katheryn

nicotianna · July 2015

Adam26 said:
Hi Liz,
Thanks for this!
What
Hi Liz,

Thanks for this!

What is the APR? The colostomy operation or the artificial anal sphincter? We're going for a second and third opinion at the Royal Marsden and also BUPA in London, maybe they could offer something like this if it came to an op?

APR

APR = abdominal perineal reconstuction

Nic

donnarush · July 2015

So sorry to hear about the

So sorry to hear about the results. I do want to give you a positive to this stoma bag. I have an aunt who will be 99 yrs. young next month. she has had this type of bag for over 35 yrs. She does fine with it. Just need to change it when needed. Just pray they get all the cancer cells for your mum...take care.

Adam26 · July 2015

Thanks Donna,
That's good to

Thanks Donna,

That's good to hear!

We are going for a second opinion next week and a third, and hoping they will be able to provide something else first. Fingers crossed.

Biopsy results

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