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

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Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sun Jan 05, 2020 9:08 pm

Great news annie ! Thanks for sharing with us WW !!! Always hopeful to hear another all clear from a fellow ww !
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Annie50
Posts: 90
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Mon Jan 06, 2020 2:08 pm

Yes ! How are you ? Xxx

Supportivechild
Posts: 20
Joined: Thu Dec 26, 2019 12:45 am

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

Postby Supportivechild » Tue Jan 07, 2020 9:39 am

Hello Peter,

Thank you for sharing your story. I see in your signature that you were originally stage as stage III T3N1 with two suspicious lymph nodes. After your treatment did they update your staging? At the moment I'm trying to wrap my mind around "suspicious nodes". I'm obviously new here as a care giver to my mother. She has a 5cm rectal tumor age 56. Diagnosed on 12-13-19. So far she's T1N1 with 2 suspicious nodes measuring 7x4 mm and 5x3 mm
Her ct abdomen pelvis with contrast and MPR results says that her liver, spleen, pancreas etc appears normal. The lung bases are unremarkable. Were waiting on the CT of her chest which will be done in a few days.

Thank you for your time
Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

prs
Posts: 161
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Wed Jan 08, 2020 12:42 am

Hi Jay,

My staging was by the Dr that performed a rectal ultrasound. I'm not sure how he determined the lymph nodes were suspicious. This Dr did note the size of my tumor but did not write anything about the size of the nodes. I did ask my radiation oncologist about this and she said the main thing was the cancer hadn't yet spread to any other organs. If there were any stray cancer cells in my lymph system then the purpose of the chemo part of the treatment was to kill them before they spread. She also mentioned that Drs are usually very conservative when they do the staging to ensure you get the treatment for the worst case scenario.

I was told that during the radiation treatment they radiated the area around my tumor to include the lymph nodes. Apparently without the suspicious lymph nodes they would have focused the radiation entirely on the tumor in order to reduce the extent of the tissue damage. I believe my surgeon checked the lymph nodes at the same time she found the tumor was gone and declared the CCR. There was no mention of staging after that, presumably because there was no evidence of disease.

Good luck with your mother, the time immediately after diagnosis is always nerve racking. You've made a great start by finding this site. Lots of information here to help you speed up the learning curve, and enable you to ask her Doctors the right questions about her treatment.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

skb
Posts: 48
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Fri Jan 10, 2020 2:45 pm

Jolene wrote:
prs wrote:Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!


Hi PRS - Thanks for sharing your wonderful news with us ! Do you still get the nerves just before each scan after so many years ?

Grateful for your contribution on this wait and watch thread ! Good luck and all the best to hitting the 5 year mark which sounds like it's just around the corner !



I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED, no detected alterations of BRAF, KRAS,NRAS, PIK3CA, PTEN

Supportivechild
Posts: 20
Joined: Thu Dec 26, 2019 12:45 am

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

Postby Supportivechild » Fri Jan 10, 2020 7:23 pm

skb wrote:
Jolene wrote:
prs wrote:Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!


Hi PRS - Thanks for sharing your wonderful news with us ! Do you still get the nerves just before each scan after so many years ?

Grateful for your contribution on this wait and watch thread ! Good luck and all the best to hitting the 5 year mark which sounds like it's just around the corner !



I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.



Thank you for your update. I mentioned watch and wait yesterday during my mothers doctors appointment and was advised that it's not something they do.
Even if they did I believe the watch and wait method would drive my mother crazy. She wants her mass cut out now! But she's in the early stages, hasn't started chemo/radiation yet.
I would love to know what made everyone decide to watch and wait?

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Jan 10, 2020 11:18 pm

skb wrote:
I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.


Hi SKB - So sorry to hear about the metastatic nodule ! :( And thanks for sharing your story which is a good reminder for all of us not to take WW for granted. Your WW treatment approach sounds really similar to mine and I will as will all of us I'm sure, to keep up with all the checks and scans. I do have a tiny suspicious nodule on my CT scan which apparently is too tiny to warrant biopsy and further follow-up. Docs said it could also be lung scars from coughs. I had done two CT in the last one year since my diagnosis to follow up and due to the radiation required for the scans, the healthcare team advised I shouldn't be doing too many of it.

Can I ask out how frequent will your future CT scans be and seeing as it's metastatic and not local recurrence - are you monitoring only the lungs and are there any talks for surgery of the rectum ?
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Jan 10, 2020 11:46 pm

Supportivechild wrote:Thank you for your update. I mentioned watch and wait yesterday during my mothers doctors appointment and was advised that it's not something they do.
Even if they did I believe the watch and wait method would drive my mother crazy. She wants her mass cut out now! But she's in the early stages, hasn't started chemo/radiation yet.
I would love to know what made everyone decide to watch and wait?

Jay


The wait and watch method is mainly for the purpose of organ preservation and is very specific to preserving the rectum in rectal cancer. The rectum is located at the bottom end of the colon and removing it or doing a surgery on it can often result in many side effects thereafter which affects the quality of life. One of the main side effect is the lost of the sphincter muscles or weak sphincter muscles resulting in a colostomy bag (in some cases for life depending on how low the tumour is). It can also affect other parts of the organ very close to the rectum such as the bladder.

After the reattachment of the colon/rectum , most patients will suffer from something called Low anterior resection syndrome (LARs) which can disrupt everyday life. There's even a thread on this if you look through it. I have been to a support group and spoke to a few patients who underwent the surgery - most of them took 2 years for life to return to normality and one of them also mentioned he was running to the toilet up to 30-40 times a day after the reattachment as the colon/rectum as it took him a long time to adjust to the reattachment. In some occasions, it can be so bad that patients are considering to return to having a colostomy bag for life which gave them much more predictability than having to go through LARs. But there are also patients who are adjusting well with all the side effects. The age of the patients has no bearing as to how much LARs they can be suffering from. It is entirely unpredictable and varies from person to person and one won't know until they have undergo the surgery.

I decided to chance it when I was qualified as a WW candidate. The thought of having a bag or adjusting to LARs is simply too much for me to bear. However, WW requires intense and diligent surveillance (every 3/4 months for the first 2 years) so as to detect any kind of recurrence or metastatic and you need to be mentally prepared for salvage surgery at any point in time. Some people can't bear the nerves and would prefer a peace of mine knowing that the damn cancer spot is removed. I still get cranky every 3 months just before a big scan and scope.

My healthcare team is following the research of Memorial Sloan Kettering Cancer center very closely. They emphasized multiple times that WW is still not main stream yet and not every doctor is keen to be on board with it but it has been a hotly debated topic in the last decade or so with the aim of improving the quality of patients' life. Check out some of these links.

https://www.mskcc.org/blog/how-watch-an ... ality-life

https://jamanetwork.com/journals/jamaon ... le/2720474
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

skb
Posts: 48
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Sat Jan 11, 2020 12:10 am

Jolene wrote:
skb wrote:
I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.


Hi SKB - So sorry to hear about the metastatic nodule ! :( And thanks for sharing your story which is a good reminder for all of us not to take WW for granted. Your WW treatment approach sounds really similar to mine and I will as will all of us I'm sure, to keep up with all the checks and scans. I do have a tiny suspicious nodule on my CT scan which apparently is too tiny to warrant biopsy and further follow-up. Docs said it could also be lung scars from coughs. I had done two CT in the last one year since my diagnosis to follow up and due to the radiation required for the scans, the healthcare team advised I shouldn't be doing too many of it.

Can I ask out how frequent will your future CT scans be and seeing as it's metastatic and not local recurrence - are you monitoring only the lungs and are there any talks for surgery of the rectum ?


Jolene,
My CT scans are 3 months apart now. Each scan is scheduled only at the readout of the prior scan.

After the VATS surgery to remove the metastatic lung nodule, the two scans that I have had were "eye to thigh"- including chest, abdomen and pelvis.

I have been also having sigmoidoscopy of the rectum every three months for the last three years. This is to monitor local recurrence. Since that area has been cancer free ever since the neoadjuvant therapy was completed in 2017, there has been no talk of rectal surgery.

There is another person in this forum in Norway who had one metastatic lung nodule removed with VATS after the completion of Wait and Watch for organ preservation. Her id is Beccashocked.

One cant say for sure whether the metastasis could have been prevented by performing rectal surgery instead of wait and watch in the first place. It is possible the spread to lungs was seeded before the time we were faced with the decision to choose between wait-and-watch and radical surgery.

If you need to talk or need any additional information, please feel free to message me.

Thanks,
skb
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED, no detected alterations of BRAF, KRAS,NRAS, PIK3CA, PTEN

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Jan 13, 2020 11:01 am

skb wrote:
Jolene,
My CT scans are 3 months apart now. Each scan is scheduled only at the readout of the prior scan.

After the VATS surgery to remove the metastatic lung nodule, the two scans that I have had were "eye to thigh"- including chest, abdomen and pelvis. I have been also having sigmoidoscopy of the rectum every three months for the last three years. This is to monitor local recurrence. Since that area has been cancer free ever since the neoadjuvant therapy was completed in 2017, there has been no talk of rectal surgery.

There is another person in this forum in Norway who had one metastatic lung nodule removed with VATS after the completion of Wait and Watch for organ preservation. Her id is Beccashocked.

One cant say for sure whether the metastasis could have been prevented by performing rectal surgery instead of wait and watch in the first place. It is possible the spread to lungs was seeded before the time we were faced with the decision to choose between wait-and-watch and radical surgery.

If you need to talk or need any additional information, please feel free to message me.

Thanks,
skb


Hi again SKB - thanks for sharing your journey. I'm glad to hear that there has been no local recurrence so far. I hope you continue to preserve your rectum and that your lung nodules all rid of ! How are you recovering from the VATS ? I don't see any signature of yours and wondering if you needed any chemo after the VATS surgery ?

One of the thing that my healthcare team emphasized as part of patient engagement is that there is simply no way of ever knowing whether the mets are due to a non-surgery nature (for WW) or seeded way before any kind of detection.

I will check out Beccashocked's post for more reading up ! Thanks for the heads up !
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

skb
Posts: 48
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Mon Jan 13, 2020 6:27 pm

Hi,
After the VATS to remove the lung nodule, I was faced with the decision to go for chemo or not.

The oncologist at Mayo wanted it, the oncologist at U of M said there is no strong case for chemo but it could go either way. In Norway (Beccashocked), the protocol is to not have more chemo.

I decided to not have more chemo. Dont know if it is right or not. There is no consensus among experts on it.The latest NCCI guidelines on this from 2018 say that more experts prefer no chemo.

Jolene,
You should not worry about potential mets at this stage.Only 8% of wait and watchers got a met (per a study I read). Just that Becca and I fell in that category.

I wish you stay in the other 92%.

Glad you decided to preserve your rectum. Good decision.

All the best
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED, no detected alterations of BRAF, KRAS,NRAS, PIK3CA, PTEN

Jolene
Posts: 142
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Jan 20, 2020 11:20 am

Hello WW-ers,

I got an all clear today with my scans and have officially passed the 1 year mark since radiation. :D

Last week I did a full colonoscopy, biopsy, MRI and ultrasound for results triangulation and it all came out negative. Doc was very pleased with what he saw.

My surveillance routine moving forward is now stretched to 4 months apart instead of 3 months.

Next up is the MRI/PET scan in May. Doc mentioned now that we are in the second year of WW, we have to be very careful of distance diseases (mets!).

Fingers crossed ! Desperately hoping to get to the 2 years mark when chances of recurrence drops drastically !!!
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear
Jan 20 - Test/scans all clear/ Continue to wait and watch

skb
Posts: 48
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Tue Jan 21, 2020 6:52 pm

Great news. Congratulations!
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED, no detected alterations of BRAF, KRAS,NRAS, PIK3CA, PTEN


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