Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

[prayingforccr]

Just stopping by, 4 years since beginning.
MRI,CT and colonoscopy still remain negative.

Thank you prs for starting this tread, a lot's of good info and support.

Happy Holidays and good health to all !

My hero!!!

May I be as fortunate

[Jolene]

Hey Mozart, thanks for checking in! Congrats on your 4th year! Wishing you all the best towards the 5th year.

Indeed, PRS's thread has given us WWers so much to learn from and to hope for!

[prs]

Thank you PRS for your encouraging and supportive words.

As my anxiety tablets were finishing soon, I checked in with a general doctor wondering if he could prescribe me some more to help overcome random panic attacks. He said it is not uncommon to experience post-traumatic stress for cancer survivors, so I felt a little more at ease hearing that. He prescribed 20 more tablets but mentioned that should I start to become dependent I have to check in with him again. My next task would be to check in with the counselor again. Once again, thanks for the comforting words.

Hi Jolene, I'm very glad to see you are feeling more optimistic. I remember the anxiety every time I had to go for one of my quarterly check ups. All I can say is it does get a lot easier as time passes. The anxiety never totally disappears but the more times you go, the more it becomes routine.

Over time my way of dealing with all this has kind of boiled down to "Control what I can control, and don't worry about the stuff I can't control". I firmly believe that hope is half the battle, so you have to live your life hoping for the best, and knowing the odds you've got this thing beat are well in your favor.

By "Control what I can control" I mean make sure your are getting all the appropriate W&W flex sigs, MRIs, CETs, blood tests etc as needed and in a timely manner. Don't rely on the doctors to remember to schedule everything. Also make sure you are eating well, and getting enough exercise. This is what you yourself can control, so if you have made sure you are doing all this, then you can give yourself permission to stop worrying about the stuff you can't control. Go out and enjoy living your life!

Jolene, I'm sorry if this stuff is pretty obvious. We are all in this together, there is no formal protocol for being on W&W. Sharing our issues with each other on this thread and discussing how we deal with them is all part of this learning process. This is how we can help each other and those who are just starting their journey.

[prs]

Just stopping by, 4 years since beginning.
MRI,CT and colonoscopy still remain negative.

Thank you prs for starting this tread, a lot's of good info and support.

Happy Holidays and good health to all !

Thank you for the kind words.

Merry Christmas and Happy New Year to all

[Jolene]

I'm officially 2 years in the clear. Yay! All came out clear for MRI/ CT / Flex scope / Biopsy / Blood test !

It has been tough and I'm exhausted but it's another year closer to the 5 year mark!

White blood cell count is low though which is strange, probably a side effect of all the chemo and radiation done? I have to speak to the oncologist about it soon.

I will forever be grateful to this amazing forum and everyone who contributed with their knowledge, experiences and encouragement. I'm not sure what I would be like without this community.

[jsbsf]

There was so much sad news when I came here in August 2019 when DH had his colonoscopy. The long term NED posts made me envious, but gave me hope.

The last treatment was late July 2020. It was a 5 day radiation session that covered the entire affected area (low rectal). The last of twelve FOLFOX infusions was on 6/2/2020. Liver resection for 2 mets was in two separate appointments, about a week apart in Feb, halfway through the chemo. That was around the time he started feeling like he might have a chance.

Pretty much all the way through, we both expected a permanent colostomy. I was only concerned about how he would feel with it, and otherwise a lot of people here who have permanent ones made me a lot more comfortable with that. He just wasn’t too crazy about the idea of having one.

Radiation was the hardest for him. I don’t think the oncologist knew just how large of an area was covered, since he originally planned for surgery. He was housebound for two weeks, and only left the house to walk around outside for a week or so more. It took more than another month for him to start feeling like he could go to the grocery store. We weren’t sure if he’d ever regain his ability to hold it, since there was always very little warning.

Originally they expected the major surgery that would require a permanent bag. Then they offered a robotic arm surgery that would leave his rectum intact for the most part, but were unsure of how his quality of life would be. Finally, they agreed that his progress was so good, the radiation wold be the final treatment.

His first exam after the radiation was in early October where the colorectal surgeon agreed to let him watch and wait. Being stage IV, that is considered very rare, but know that it is possible. Since then, he goes every three months for a rectal exam, and every three months for a CT scan. He’s due for his first follow up colonoscopy sometime this year. So far they are giving him a clean bill of health.

As far as the radiation, we were both unprepared - especially since we didn’t think it would be an option. It is really tough on your immune system and I believe it stays in the body for a very long time. He feels fine now. Although there is permanent damage and scarring, he can come and go as he pleases with no fear of an accident.

[prs]

I'm officially 2 years in the clear. Yay! All came out clear for MRI/ CT / Flex scope / Biopsy / Blood test !

It has been tough and I'm exhausted but it's another year closer to the 5 year mark!

White blood cell count is low though which is strange, probably a side effect of all the chemo and radiation done? I have to speak to the oncologist about it soon.

I will forever be grateful to this amazing forum and everyone who contributed with their knowledge, experiences and encouragement. I'm not sure what I would be like without this community.

Jolene, I somehow missed your post. What great news, and many congratulations!

[prs]

There was so much sad news when I came here in August 2019 when DH had his colonoscopy. The long term NED posts made me envious, but gave me hope.

The last treatment was late July 2020. It was a 5 day radiation session that covered the entire affected area (low rectal). The last of twelve FOLFOX infusions was on 6/2/2020. Liver resection for 2 mets was in two separate appointments, about a week apart in Feb, halfway through the chemo. That was around the time he started feeling like he might have a chance.

Pretty much all the way through, we both expected a permanent colostomy. I was only concerned about how he would feel with it, and otherwise a lot of people here who have permanent ones made me a lot more comfortable with that. He just wasn’t too crazy about the idea of having one.

Radiation was the hardest for him. I don’t think the oncologist knew just how large of an area was covered, since he originally planned for surgery. He was housebound for two weeks, and only left the house to walk around outside for a week or so more. It took more than another month for him to start feeling like he could go to the grocery store. We weren’t sure if he’d ever regain his ability to hold it, since there was always very little warning.

Originally they expected the major surgery that would require a permanent bag. Then they offered a robotic arm surgery that would leave his rectum intact for the most part, but were unsure of how his quality of life would be. Finally, they agreed that his progress was so good, the radiation wold be the final treatment.

His first exam after the radiation was in early October where the colorectal surgeon agreed to let him watch and wait. Being stage IV, that is considered very rare, but know that it is possible. Since then, he goes every three months for a rectal exam, and every three months for a CT scan. He’s due for his first follow up colonoscopy sometime this year. So far they are giving him a clean bill of health.

As far as the radiation, we were both unprepared - especially since we didn’t think it would be an option. It is really tough on your immune system and I believe it stays in the body for a very long time. He feels fine now. Although there is permanent damage and scarring, he can come and go as he pleases with no fear of an accident.

Congratulations on your DH's recovery. I think he might be the first Stage IV to make it onto W&W. Just like your DH I found the radiation burn to be the worst, particularly the couple of weeks after the last treatment. A bowel movement was incredibly painful, I remember having to go lie face down on my bed with the curtains drawn and just try to ride it out. You start wondering if the treatment isn't worse than the disease, and if it's really worth it. Of course that pain does go away, and that's when you decide it was worth it.

I don't believe the radiation stays in your body for a long time, but I believe some of its effects on your blood counts are just about permanent. It's five years now and all my counts are stable at, or just below, the low end of the normal range. They were all in the middle of the normal range before treatment. The low counts have reduced my ability to exercise.

The effect on your rectum does slowly improve over time, I'm just about back to normal after five years, and my surgeon has difficulty finding any scar tissue left by the tumor. It was well over a year before I stopped having to respond to the urgent need to prevent an accident. I did find if I was outside with nowhere to go, I could stand up perfectly still and focus my entire concentration on holding it in. It would take a few minutes but the urge would eventually go away.

Hope everything continues to work out great for your hubby, for sure the worst is over!

[Cnotesdip]

I was diagnosed with a very low tumor my doctor told me about this procedure because I didn’t want to get the colonstomy procedure done, so we did radio therapy along with xeloda 7 pills per day on radiation days they gave me 28 sessions of radio the tumor slowly died 3 months later it was completely gone and whatever was left was removed by my proctologist in a small procuedure which tested negative on a biopsy, a year later the cancer had moved to my lungs.

[prs]

I was diagnosed with a very low tumor my doctor told me about this procedure because I didn’t want to get the colonstomy procedure done, so we did radio therapy along with xeloda 7 pills per day on radiation days they gave me 28 sessions of radio the tumor slowly died 3 months later it was completely gone and whatever was left was removed by my proctologist in a small procuedure which tested negative on a biopsy, a year later the cancer had moved to my lungs.

So sorry to hear about your metastasis to the lungs. You note you had chemoradiation treatment but haven't said if that was followed up with a course of mop-up chemotherapy. One thing we've noted here so far is there has been a much higher success rate with those of us who had the mop-up chemo compared to those of us who didn't.

The theory being the mop-up chemo knocks out any stray cancer cells that were not killed by the radiation, and destroys them before they find a new home in your body and start to multiply

My mop-up treatment was six months of Xelox, but I could have chosen six months of Folfox.

[JamesInToronto]

I too had a low rectal tumor. No lymph involvement, no mets detected at first.
After chemo/rad the tumor was still there. Maybe it shrunk, maybe it didn't. Dr. said it did.
I was wishing for a "watch and wait" but did not get lucky.
Dr. wanted to remove entire rectum. "No!" said I, just cut out the tumor. So he did. It worked. Negative margins.
Very happy to still have an anus. The sphincter got cut but most days the plumbing works. I'm 59yrs.
Six months later, one spot in left lung. Waited until it grew to 1.8cm. Then surgery removed it.
The decision to spare my anus did not cause the lung met. It was there already, just too small to notice.
Lung surgery was no problem thanks to a competent surgeon. In fact I enjoyed the morphine very much.
Thought I was finished but got a call from medical onc three months later.
Now on Folfox round 3 of a 12 round match.
Hate it yet it is tolerable. Only 3 days of 14 are miserable. The other days have fatigue and slightly quezey.
There are other symptoms but I can work still.
Not even sure I need the Chemo.
My question to you good people.... does Chemo work? What's the downside of going just 7 rounds of the planned 12? I've read that such a plan is 90% of the benefit?
I hate reading about recurrence after chemo. Who wants to endure chemo unless it gives you years, not just months?
My friend said I need to do more research. I've done well over 100 hours and pretty much return to the advice of Doctors, who I figure spend their whole life on the subject. Yet I realize that they tend not to be very curious nor do they dare stray from standard of care for fear of career risk. I have this belief that we patients waste a lot of time on researching our disease, but maybe we'd be better off smelling roses and watching birds?

[prs]

Hi James, mop-up chemo does work. To my recollection all the successful W&Wers who have contributed to this thread did have the chemo. I'm also fairly sure all those who unfortunately did have either a recurrence or a metastasis did not have the chemo.

There is some discussion in this thread about reducing the length of the chemo, but I don't recall exactly where it is. I know it's a very long thread, but maybe you could read four or five pages per day?

[MadMed]

Hi all, newly diagnosed not even in treatment yet, but avidely reading this forum. I had read this thread before meeting with my surgeon today and he brought up Habr-Gama himself. He made it clear that he was not a fan but wanted me to be informed of this. According to him, the new standard of care TNT for rectal cancer leads to 25-30% cCR. Out of that percentage, 6% will have a recurrence and in his mind that would be catastrophic and difficult to manage. This is where he lost me a bit.

Not wanting to argue with the man that will most likely cut me open, i left the topic alone. But it is still rolling in my head. Let me share my thinking and tell me if it's a stupid idea:

• Go through the TNT regiment (no arguing here)
• If you are cCR, then use something like signatera to see if there are no traces in your bloodstream, it has a specificity of 99.5% and 88% accuracy. Basically a supercharged CEA. Also do your normal CEA/CT etc..
• If signatera comes back positive, go ahead with the surgery as planned.
• if not, then W&W with frequent Signatera and CEA to be complete with periodic scans.

Am I nuts ? Wouldn't this improve W&W ? My main issue is my CEA is low and won't change unless it gets really bad.

[Cnotesdip]

I was diagnosed with a very low tumor my doctor told me about this procedure because I didn’t want to get the colonstomy procedure done, so we did radio therapy along with xeloda 7 pills per day on radiation days they gave me 28 sessions of radio the tumor slowly died 3 months later it was completely gone and whatever was left was removed by my proctologist in a small procuedure which tested negative on a biopsy, a year later the cancer had moved to my lungs.

So sorry to hear about your metastasis to the lungs. You note you had chemoradiation treatment but haven't said if that was followed up with a course of mop-up chemotherapy. One thing we've noted here so far is there has been a much higher success rate with those of us who had the mop-up chemo compared to those of us who didn't.

The theory being the mop-up chemo knocks out any stray cancer cells that were not killed by the radiation, and destroys them before they find a new home in your body and start to multiply

My mop-up treatment was six months of Xelox, but I could have chosen six months of Folfox.

After COVID there was no chemotherapy here I am in the Dominican Republic I only took Xeloda while taking radiation I figured I was ok thinking about it now chemo mop up sounded like what should have been done

[Jolene]

Hi all, newly diagnosed not even in treatment yet, but avidely reading this forum. I had read this thread before meeting with my surgeon today and he brought up Habr-Gama himself. He made it clear that he was not a fan but wanted me to be informed of this. According to him, the new standard of care TNT for rectal cancer leads to 25-30% cCR. Out of that percentage, 6% will have a recurrence and in his mind that would be catastrophic and difficult to manage. This is where he lost me a bit.

Not wanting to argue with the man that will most likely cut me open, i left the topic alone. But it is still rolling in my head. Let me share my thinking and tell me if it's a stupid idea:

• Go through the TNT regiment (no arguing here)
• If you are cCR, then use something like signatera to see if there are no traces in your bloodstream, it has a specificity of 99.5% and 88% accuracy. Basically a supercharged CEA. Also do your normal CEA/CT etc..
• If signatera comes back positive, go ahead with the surgery as planned.
• if not, then W&W with frequent Signatera and CEA to be complete with periodic scans.

Am I nuts ? Wouldn't this improve W&W ? My main issue is my CEA is low and won't change unless it gets really bad.

I hope this isn't too late.

I'm not familiar with the concept of using signatera for CCR management so I can't really comment. My doctor who is very pro WW has never mentioned this method of managing before and I don't think I've come across any research that uses signatera to make judgment of whether one should proceed with WW or not. How did you come about with this idea? Did you read about it somewhere?

You can see from my signature that my doctor basically uses MRI + scope check (for site check) + biopsy to triangulate the positive results once every 3 months in the first year of WW. It was then spaced out to once every 4 months and now in my 2.5 years in of WW, it is being spaced out to once every 6 months. PET was also done as regularly as possible ( once every 9-12 months) to keep track of any stray cancer cells in the body.

A lot of us here have low CEA that are unreliable and I believed that has never been a good tool for WW to begin with. I'm not familiar with signatera but my feeling is that you can't beat a management that includes advancing imaging techniques such as MRI + scope (and biopsy) + PET scan on regular basis. Hope this helps.