Post-op NED

Adam26

Hi guys,

Just posting an update about my mum and also here to ask a question. My mum had a successful operation, she actually had to have two because she had bowed adhesions causing her a blockage so she needed that taken care of. She now has a colostomy bag and is looking forward to irrigating in a few months, so she'll just have a cap rather than a bag.

Her post-op results were very good: there were no signs of cancer in the tissue that was removed in the op and they say it was all removed during the biopsy! So the surgeon is very confident it's all gone now.

The only bad news, which leads me to my question, is he said that while it was a small stage 1 tumour, it was poorly differentiated, which is rarer than most and more aggressive. Probably explains why she had to have an operation. What confuses me is her two oncologists both said after the biopsy that's it's "small, slow to spread" etc. Obviously it is/was a more aggressive carcinoma, but since it is an anal carcinoma, can we assume that it would still have been slow spreading? Does anyone have any info on poorly differentiated ones as while they say it's gone now I still find it terrifying.

TraceyUSA

Adam

Unfortunately, I cannot comment on your question .. hopefully, someone here can.  But I was glad to see your post as I've been thinking of you and your Mum and wondering how all was going.

Thoughts & Well wishes to you both,

Tracey

mp327

Adam

I am glad you posted an update, as your mom and you have crossed my mind often.  I'm very happy to hear that her surgery was successful and I hope she is adjusting okay to the challenges of having an ostomy.  Thank goodness the path reports came back showing no cancer.

As for your question about the aggressive nature of poorly differentiated cancer, I believe that is true--those types of cancer cells tend to be more likely to spread.  I have pasted in the definition of "differentiation" from the website for the National Cancer Institute.   

differentiation

listen (DIH-feh-REN-shee-AY-shun)

In biology, describes the processes by which immature cells become mature cells with specific functions. In cancer, this describes how much or how little tumor tissue looks like the normal tissue it came from. Well-differentiated cancer cells look more like normal cells and tend to grow and spread more slowly than poorly differentiated or undifferentiated cancer cells. Differentiation is used in tumor grading systems, which are different for each type of cancer.

I have been communicating with anal cancer patients/survivors for almost 7 years now, and it is obvious that some people's cancer is more aggressive.  Most with small tumors (T1, T2) do quite well post-treatment with no recurrence.  However, there are cases with small tumors where metastases occurs, perhaps due to the fact that the cancer cells were/are poorly differentiated. 

I wish you and your mom all the very best and hope that all of this is behind both of you now.  Please come back for an update when you can.

Martha

EvelynB

Adam

I am relatively new to this site but I have been reading your previous posts and following your mom's story. So very glad to hear that she is now NED. You mentioned that she is looking forward to irrigating in a few months. As much research as I have done, this is the first time I have heard about this. Can you tell me what that involves? I am looking at the possibility  of the "dreaded APR surgery" and, like you and your mom, I am both terrified and a little depressed at the prospect.

   

Adam26

Hey guys,
Thank you for your

Hey guys,

Thank you for your messages and Msrtha for your info!

My mum is only 3 weeks post op and she's already up and about and my step dad has taken her out for a drive today, so she can see the world.

Martha, since anal cancer is generally not aggressive, does that mean she had an "aggressive" cancer when compared to other types of cancer or "aggressive" compared to other anal cancer grades? It's essentially an aggressive form of a less-aggressive cancer. I read recently that with anal cancer, there wasn't a big difference in the prognosis caused by the tumour grading, but rather the staging itself and the oncs still said it was "slow". Maybe I just should forget about this as there's nothing I can do anyway. Just support my mum in her rehab instead!

Adam26

EvelynB said:

Adam

I am relatively new to this site but I have been reading your previous posts and following your mom's story. So very glad to hear that she is now NED. You mentioned that she is looking forward to irrigating in a few months. As much research as I have done, this is the first time I have heard about this. Can you tell me what that involves? I am looking at the possibility  of the "dreaded APR surgery" and, like you and your mom, I am both terrified and a little depressed at the prospect.

   

Hi Evelyn, thank you!
I won't

Hi Evelyn, thank you!

I won't lie, the APR surgery wasn't easy for my mum as it was about 6 hours ano the recovery time is about 7 weeks I believe, that said, just over 4 weeks on and my mum is now on her feet and doing things, so it's not all doom and gloom. She should get better with every day now.

As for irrigating, you normally start it about 3-6 months post-op. It's hard to explain, but it's essentially infusing water into your bowels to draw out waste. You do this once every two days (My mum will do hers early in the morning), then that's you done. It means you then go and wear a cap, rather than a bag. It's supposed to be life changing for colostomy people, but difficult to get used to at first. I have also been looking into "artificial anal sphincters" which I know they are working on as I write this. Don't know how long it will take or if indeed they'd even be suitable for people like you (if you ever even need it) and my mum, but fingers crossed.

sephie

Adam26 said:

Hey guys,
Thank you for your

Hey guys,

Thank you for your messages and Msrtha for your info!

My mum is only 3 weeks post op and she's already up and about and my step dad has taken her out for a drive today, so she can see the world.

Martha, since anal cancer is generally not aggressive, does that mean she had an "aggressive" cancer when compared to other types of cancer or "aggressive" compared to other anal cancer grades? It's essentially an aggressive form of a less-aggressive cancer. I read recently that with anal cancer, there wasn't a big difference in the prognosis caused by the tumour grading, but rather the staging itself and the oncs still said it was "slow". Maybe I just should forget about this as there's nothing I can do anyway. Just support my mum in her rehab instead!

poorly differentiated

adam, i had poorly differentiatied cancer according to MD anderson. diagnosed March 31, 2009... i was stage 2, no mets, no nodes..... i went thru the regular protocol and had only 27 radiation txs which is a few less than others....i am 6 years and 2 months post tx with NED.... every case seems to be different and it truly does depend on the individual person and their tx.... so even tho this cancer seems to be slow growing ( i probably had it for 2 years before diagnosed correctly) once it grows the cells change at different rates for different people.... i had immune system problems prior to this. ... hope your mom gets bettter and better.... tell her to be patient and do not get discouraged because i could barely function for 3 months after tx....it took a year before i felt almost normal.... but do not let my recovery time discourage you.... i was 56 years old when diagnosed correctly.... also, the surgeon ( not at MDA ) who finally diagnosed me correctly tried to remove the entire tumor but stopped in order to save my spincter--- this might have helped me get better results because it was not as large at time of tx...  sephie

EvelynB

Adam26 said:

Hi Evelyn, thank you!
I won't

Hi Evelyn, thank you!

I won't lie, the APR surgery wasn't easy for my mum as it was about 6 hours ano the recovery time is about 7 weeks I believe, that said, just over 4 weeks on and my mum is now on her feet and doing things, so it's not all doom and gloom. She should get better with every day now.

As for irrigating, you normally start it about 3-6 months post-op. It's hard to explain, but it's essentially infusing water into your bowels to draw out waste. You do this once every two days (My mum will do hers early in the morning), then that's you done. It means you then go and wear a cap, rather than a bag. It's supposed to be life changing for colostomy people, but difficult to get used to at first. I have also been looking into "artificial anal sphincters" which I know they are working on as I write this. Don't know how long it will take or if indeed they'd even be suitable for people like you (if you ever even need it) and my mum, but fingers crossed.

Thanks, Adam!

Although I, of course, hope I don"t have to walk that road, this gives me a little hope! I just looked up pics of people with the caps and it's not bad. Actually there are pics of people with bags that have gotten creative and it's not that bad either. Your mom is so very lucky to have you to research and be an advocate for her. This will greatly influence her recovery. You should feel really great about that.

mp327

Adam26 said:

Hey guys,
Thank you for your

Hey guys,

Thank you for your messages and Msrtha for your info!

My mum is only 3 weeks post op and she's already up and about and my step dad has taken her out for a drive today, so she can see the world.

Martha, since anal cancer is generally not aggressive, does that mean she had an "aggressive" cancer when compared to other types of cancer or "aggressive" compared to other anal cancer grades? It's essentially an aggressive form of a less-aggressive cancer. I read recently that with anal cancer, there wasn't a big difference in the prognosis caused by the tumour grading, but rather the staging itself and the oncs still said it was "slow". Maybe I just should forget about this as there's nothing I can do anyway. Just support my mum in her rehab instead!

Adam

I really don't know the answers to your questions.  I have often scratched my head on this issue too, wondering why some peoples' cancers seem to metastasize, despite them receiving the same treatment as those whose cancers do not spread.  I think your questions would be best answered by a doctor, either an oncologist or perhaps a pathologist.

I'm glad you're mom is up and around and that she went for an outing!  That's great and it sounds like she is making a good recovery!  I wish her all the very best.

Martha

Adam26

mp327 said:

Adam

I really don't know the answers to your questions.  I have often scratched my head on this issue too, wondering why some peoples' cancers seem to metastasize, despite them receiving the same treatment as those whose cancers do not spread.  I think your questions would be best answered by a doctor, either an oncologist or perhaps a pathologist.

I'm glad you're mom is up and around and that she went for an outing!  That's great and it sounds like she is making a good recovery!  I wish her all the very best.

Martha

Hey Martha,
I'm obviously not

Hey Martha,

I'm obviously not aware of the situations around those you mentioned who had recurrence etc, however something that might help you when you are giving advice is this:

My mum had her initial NED in January which was 3 months post treatment. She then had a digital rectal examination in May. Her MRI was actually all clear in June, so in theory we could quite easily have walked out the office happy, unaware she still had cancer. Of course in that time it could have spread and done all sorts. The only reason we found it early again is because the onc was so cautious. After the digital rectal he had her see a bottom specialist and he gave her a biopsy. So the advice to give others, especially so soon after treatment is: you can never be too cautious.

Maybe that is why they experienced spreading Martha, because after the treatment had seemingly worked, they had nothing but scans which failed to pick anything up initially. 

My mum is doing quite well now, she's driving again and walking now and looking forward to seeing even more improvement over the next few weeks! Think I mentioned that the specimen they removed showed now signs of cancer as it was all taken out in the biopsy. 

nicotianna

Adam26 said:

Hey Martha,
I'm obviously not

Hey Martha,

I'm obviously not aware of the situations around those you mentioned who had recurrence etc, however something that might help you when you are giving advice is this:

My mum had her initial NED in January which was 3 months post treatment. She then had a digital rectal examination in May. Her MRI was actually all clear in June, so in theory we could quite easily have walked out the office happy, unaware she still had cancer. Of course in that time it could have spread and done all sorts. The only reason we found it early again is because the onc was so cautious. After the digital rectal he had her see a bottom specialist and he gave her a biopsy. So the advice to give others, especially so soon after treatment is: you can never be too cautious.

Maybe that is why they experienced spreading Martha, because after the treatment had seemingly worked, they had nothing but scans which failed to pick anything up initially. 

My mum is doing quite well now, she's driving again and walking now and looking forward to seeing even more improvement over the next few weeks! Think I mentioned that the specimen they removed showed now signs of cancer as it was all taken out in the biopsy. 

pathology reports

Hi Adam - I recommend your getting all of your Mum's path reports.  You can google much of the info they contain.  Your oncologist could explain them to you as well.  My oncologist was not helpful.  My original biopsy report did not state the differentiaion but did report it as a "basaloid squamous cell"  cancer which is cosidered to be aggressive.  My lung path reported "poorly differentiated" sqaumous cell AC.

Happy to hear your Mum is doing well:)

Nic

Adam26

nicotianna said:

pathology reports

Hi Adam - I recommend your getting all of your Mum's path reports.  You can google much of the info they contain.  Your oncologist could explain them to you as well.  My oncologist was not helpful.  My original biopsy report did not state the differentiaion but did report it as a "basaloid squamous cell"  cancer which is cosidered to be aggressive.  My lung path reported "poorly differentiated" sqaumous cell AC.

Happy to hear your Mum is doing well:)

Nic

Hi Nic,
Thanks for your help.

Hi Nic,

Thanks for your help. Do you know how aggressive it was considered to be? It's what confuses me as anal cancer is supposed to be slow to develop so I wonder are the "aggressive forms" still considered very treatable when compared to other forms of cancer. The only info I found was something that said with anal cancer the grade doesn't really affect the prognosis of the patient, this was based on an experiment they did where the important factors were the staging and something else.

If I'm brave enough I will ask the onc when we next see him.

Thank you for your good wishes!

sandysp

Adam26 said:

Hi Nic,
Thanks for your help.

Hi Nic,

Thanks for your help. Do you know how aggressive it was considered to be? It's what confuses me as anal cancer is supposed to be slow to develop so I wonder are the "aggressive forms" still considered very treatable when compared to other forms of cancer. The only info I found was something that said with anal cancer the grade doesn't really affect the prognosis of the patient, this was based on an experiment they did where the important factors were the staging and something else.

If I'm brave enough I will ask the onc when we next see him.

Thank you for your good wishes!

type of cell

My tumor was poorly differentiated and had spread to the rectum and even into the lower colon, it was also in lymph nodes in the groin and pelvis. I am four years out and recently had an excellent checkup. 

I am wondering if your mother's tumor was a squamous cell tumor? There are a couple of other types, including basil cell and melanoma, I believe. The type of cell most responsive to treatment is the squamous cell tumor. 

This is all I have. I hope your mom continues to heal as quickly as possible from what sounds like a very taxing surgery.

All the best,

 

Sandy