Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Jul 21, 2017 4:50 am

I had rectal bleeding around June 26 and went into the hospital because it was a scary amount of blood. Had a CT scan done and they determined that it was a mass and did a colonoscopy, got a biopsy, sent it out and it's cancer. I've learned about the expected treatments (28 days of 5 FU + Radiation which will be done locally), six weeks of rest, surgery (Brighams and Womens in Boston), rest, then Chemo and had an MRI which shows stage 3A. I've had consults with the local oncologist, local radiologist, Dana Farber oncologist, Dana Farber radiologist and B&W Surgeon. So I'm more or less prepared to start. The tough part has been the waiting as it takes time to schedule services.

The hospitals in Boston are relatively difficult to get started with - it is hard to get hold of someone to get back to you and it's hard to call as you leave a message and someone calls you back and you go around again if you're not near your phone when they call. Once you become a known patient, the process is easier.

I have had the tumor prolapse from time to time and there's often a lot of blood when this happens. This morning, though, it prolapsed and wouldn't go back in and was bleeding a lot. I've indicated to my providers that the size of the mass is becoming a problem. I was considering going into the emergency room this morning for all of the blood loss but I managed to manually push the tumor back in. I have an appointment with the oncologist at lunchtime and will discuss this. I did ask the surgeon about cutting out part of the tumor to make life easier but she indicated that they generally don't do this as it will grow right back. I understood this - I was just trying to get some relief and avoid something like this happening again.

I've also been eating less because of worry about the size of the tumor and have had trouble sleeping because of the emotional aspects of cancer.

I've read that the tumor shrinks quite a bit when exposed to radiation and I'm quite looking forward to that though the effects of chemo and radiation are scary. I've read that many do fine with it and continue working through it (which I plan to do but we'll see). I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread. I hope that this isn't the case for me.

A bit of background on me: 58 years male, I was heavy in my 40s at 245 pounds but am down to about 180 now and got as low as 170 a few years ago. I like to run (ran 1,500+ miles a few years ago), lift, do yoga, stretching and a few other things. I have had a very stressful life - our son had a major illness a decade ago and it took a lot out of me. I have a very stressful job and food was a stress-reliever. If I didn't have cancer, most would consider me quite healthy. But my oncologist told me that the major risk factor for colorectal cancer is turning 50. Yes, I should have had colonoscopies at 50 and I would likely not be going through this but I previously hadn't used hospital services for forty years.

The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.

My wife and kids aren't ready to see me go though I'm working on preparing things so that they are relatively comfortable if I'm not still around. Everyone tells me that I'll get through this and I've had offers of support from friends and family that I didn't expect. I've seen the technological progress on the war on cancer and intellectually understand that surviving five or ten years could bring cures or vaccines to various kinds of cancer. I'd love it if there were targeted treatments for colorectal cancer but these seem to be developed for other kinds of cancer that are difficult to treat like Lung Cancer.

I'm planning on getting a genomic analysis of the tumor at Mass General Hospital. A pathologist recommend a Micro Satellite Instability test and they'd be able to do a full analysis to see if there are any targeted treatments that would be more effective than the standard regimen. I'm not particularly hopeful that there is and I don't know if my insurance would cover it anyways. Some of these targeted drugs are quite expensive compared to 5FU. I'm curious if anyone else here has had the genomic testing done. The tumor biopsy is at a local hospital and I have to figure out how to get it to Mass General.

One of the frustrating things that my oncologist keeps saying is that it will take a week to get the Xeloda because it has to come by mail order. I assume that the insurance company requires this to get better prices but I see that I can get 84x500mg at Costco for about $1,000 with a coupon and no insurance. I suspect that I could cover the difference or just pay retail for a week of pills and they can mail-order the rest. I plan to ask the oncologist about doing this at my appointment today. I am also eager to get the Radiology prep work done. They put two small tattoos on you to set alignment points for the radiation machine.

I am also trying to scope out costs for the oncologist to manage the chemo (I assume that I go there once a week) and also the radiation center (daily). My maximum out-of-pocket is $2,000 and I'm at $1,400 right now. I don't know whether or not maximum out-of-pocket includes the oncology and radiology visits. I would assume that both have $35 copays and 28 radiology visits at $35 each would work out to about $1,000 which I could manage. Maybe another couple of hundred for the oncology visits. I suppose that I shouldn't be thinking so much about the costs right now but I like to have a rough idea on expenses going forward six months. I imagine that people are all over the place on insurance coverage and costs for services.

I did visit Dana Farber Cancer Institute in Boston and the things that struck me were the size of the place and the amount of volume that they do. It explains why they are initially difficult to get in touch with. When I went there for the consults, I went into the GI area and they redirected me to intake. They had a lot of people there to do your intake paperwork and explanations. Then back to GI for my appointment. There were probably 30 people in the waiting room for GI. I was there quite early and they called me in the first time and that was to take temperature, weight, height, blood pressure, heartrate and O2. Then I was released and went back to the waiting room. Then I was called and a grad student asked me some questions and then requested consent to being part of research studies. I said sure and she said that they might want to get blood samples when I'm there in the future.

Then back to the waiting room, get called in and I think that it was an intern that asked me a bunch of questions. He left the room for a while to talk to the doctor and then he and the doctor came back to talk to me. This was the standard approach for my consults at Dana Farber Cancer Institute and Brigham and Womens Hospital. BTW, if you do consider DFCI for your hospital, you should know that they do the outpatient stuff and that they use Brigham and Womens for in-patient stuff. So you often see the names together in rankings. I was originally going to do everything locally here but friends and relatives suggested I get second opinions from the Boston hospitals with Dana Farber, Mass General Hospital and Brigham and Womens as the top places. I would say that the doctors in Boston were more knowledgeable about various things than the local doctors as they see far more of their particular specialties. They indicated that chemo/radiation would be fine done locally. It would be rather impractical to go into Boston every day for radiation is it would cost me three or more hours in traffic daily.

I'm the kind of person that likes to track things. I've tracked calories for about ten years and I've kept a health diary. I also started a cancer diary when I was diagnosed and this thing is helpful. It has all of my contact information making it easy to pass them on to care providers and for me to call people and it allows me to answer questions easily that care providers ask. I've also taken some pictures that are sometimes illustrative. The one that I've shown the most is a toilet full of blood from the initial event that prompted my visit to the Emergency Room.

I told my manager when I found out so that she knows my condition and she's been very supportive. Another co-worker had cancer last year and it was a type of cancer where he had to take short-term disability. He tipped over from short-term to long-term and lost his benefits and had to sign up for COBRA at a time when it was difficult for him to figure all of this stuff out. He did come back shortly thereafter but was nice enough to tell us about this potential situation for disability in general. So I'm basically going to try to work through the treatments as best as I can or use up sick time, and vacation time ahead of short-term disability. I suspect that I won't be able to work through the surgery recovery but that's supposed to be only 4-5 days. I might be able to work through the longer recovery (6 weeks), as long as I can sit up in front of a computer and not be in a ton of pain.

The radiologist told me about a cancer support group at our local YMCA though I lost the literature on it.

So that's a fair amount about my situation and you can probably tell that I like to write.

I guess my questions for those with experience are:

- How do you deal with the mass getting bigger while waiting to start treatment?
- Have others had a prolapse of the mass?
- How bad can the financial stuff be with copays, deductibles, out-of-pocket maximums? I think that either the local oncologist or radiologist said something about people getting treatment until they ran out of money for it (sounds horrible to think about)
- Do folks here use local support groups? I was considering trying to find our local group and attending a session.

Please feel free to ask me questions and offer advice as I'm sure that I still have a lot to learn and I'd rather learn stuff these days from others instead of learning the hard way.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Lee » Fri Jul 21, 2017 11:25 am

NHMike wrote:The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.


The radiologist told me about a cancer support group at our local YMCA though I lost the literature on it.



I guess my questions for those with experience are:

- How do you deal with the mass getting bigger while waiting to start treatment?
- Have others had a prolapse of the mass?
- How bad can the financial stuff be with copays, deductibles, out-of-pocket maximums? I think that either the local oncologist or radiologist said something about people getting treatment until they ran out of money for it (sounds horrible to think about)
- Do folks here use local support groups? I was considering trying to find our local group and attending a session.

Please feel free to ask me questions and offer advice as I'm sure that I still have a lot to learn and I'd rather learn stuff these days from others instead of learning the hard way.


Hi Mike and welcome, sorry for the reason you are here.

Regarding questions, why are you waiting? Sorry when I was diagnosed on a Friday, I was seeing my Onc the following Tuesday, surgeon on Wednesday and radiation on Thursday. I was in active treatment within 2 weeks of diagnoses. You might want to consider another team of doctors.

I did not have a prolaspse, again I surprised you are not getting treatment yet.

Yes financial situation can be a challenge. Cancer diagnoses is a financial burden.

For me, no to support group. Soon after I was diagnosed, was having lunch with a friend, complaining about radiation dept wanting me to sign up for there 'yoga support grp' or something like that. I didn't have time for this with 2 young kids. Friend told me just say no thank you and leave it at that. This "yoga" was suppose to relax me, not stress me out. From what I heard from a few people who tried support grp, they can bring you down emotionally. There is always a few people in these grp who need professional help and expect you to provide them with that type of support.

Regarding the colostomy bag. I have one, best decision I made, and for me gave me my life back. Most people don't know that I have one unless I tell and I am very open about it. Figure it is a teaching opportunity about colon cancer. Radiation was successful for me, butt destroyed 2/3 of my rectal muscles, thus I was tied to toilet anytime I ate (please understand, this was 13 years ago. A lot of advancements since then). Bottom line, I did not eat until I was home for the day, and many times that was not until 3 or 4 in afternoon.

I told my surgeon she had carte blanc to take all she wanted, just get all the cancer. She was successful. I am NED today.

Anyway, regarding the bag, I can eat what I want and not worry how certain foods can effect my "new" plumbing system". I don't have to plan my days around my new system or always have to know where the nearest bathroom is. I always carry a few supplies with me and change when need to. I'm in control of my day, not my bowels.

You may want to see a ostomy nurse prior to your surgery.

Make sure a board certified colon rectal surgeon is doing your surgery.

Hope this helps some, remember one day at a time. You have joined a wonderful place that has a lot of information and support.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Basil » Fri Jul 21, 2017 3:07 pm

Might ask about the PROSPECT trial if you want to avoid radiation. It gives 6 rounds of FOLFOX instead of chemorad. I am under it and had 80% regression from chemo alone. Now waiting on surgery.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Jul 21, 2017 5:49 pm

Lee wrote:
NHMike wrote:The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.

The radiologist told me about a cancer support group at our local YMCA though I lost the literature on it.

I guess my questions for those with experience are:

- How do you deal with the mass getting bigger while waiting to start treatment?
- Have others had a prolapse of the mass?
- How bad can the financial stuff be with copays, deductibles, out-of-pocket maximums? I think that either the local oncologist or radiologist said something about people getting treatment until they ran out of money for it (sounds horrible to think about)
- Do folks here use local support groups? I was considering trying to find our local group and attending a session.

Please feel free to ask me questions and offer advice as I'm sure that I still have a lot to learn and I'd rather learn stuff these days from others instead of learning the hard way.


Hi Mike and welcome, sorry for the reason you are here.

Regarding questions, why are you waiting? Sorry when I was diagnosed on a Friday, I was seeing my Onc the following Tuesday, surgeon on Wednesday and radiation on Thursday. I was in active treatment within 2 weeks of diagnoses. You might want to consider another team of doctors.

I did not have a prolaspse, again I surprised you are not getting treatment yet.

Yes financial situation can be a challenge. Cancer diagnoses is a financial burden.

For me, no to support group. Soon after I was diagnosed, was having lunch with a friend, complaining about radiation dept wanting me to sign up for there 'yoga support grp' or something like that. I didn't have time for this with 2 young kids. Friend told me just say no thank you and leave it at that. This "yoga" was suppose to relax me, not stress me out. From what I heard from a few people who tried support grp, they can bring you down emotionally. There is always a few people in these grp who need professional help and expect you to provide them with that type of support.

Regarding the colostomy bag. I have one, best decision I made, and for me gave me my life back. Most people don't know that I have one unless I tell and I am very open about it. Figure it is a teaching opportunity about colon cancer. Radiation was successful for me, butt destroyed 2/3 of my rectal muscles, thus I was tied to toilet anytime I ate (please understand, this was 13 years ago. A lot of advancements since then). Bottom line, I did not eat until I was home for the day, and many times that was not until 3 or 4 in afternoon.

I told my surgeon she had carte blanc to take all she wanted, just get all the cancer. She was successful. I am NED today.

Anyway, regarding the bag, I can eat what I want and not worry how certain foods can effect my "new" plumbing system". I don't have to plan my days around my new system or always have to know where the nearest bathroom is. I always carry a few supplies with me and change when need to. I'm in control of my day, not my bowels.

You may want to see a ostomy nurse prior to your surgery.

Make sure a board certified colon rectal surgeon is doing your surgery.

Hope this helps some, remember one day at a time. You have joined a wonderful place that has a lot of information and support.

Lee


Thanks, Lee, for your response.

I was surprised at how slow the process was. Many advised me to get a second opinion at the Boston hospitals and I did that but it took a couple of weeks to get through it all. I suspect that they would have been able to get me started quickly because they are set up for volume but that's not the case locally. I have been trying to move things as quickly as I can at this point and my start date is at the end of the month. I saw the oncologist and radiologist and the latter had me measured (CT scan + tattoo dots for alignment) and I have a schedule of treatments. If I had it to do over again, I'd try to figure out a faster way to do it.

I did ask the Boston guys about using the locals for Chemo/Rad and they said that it should be fine but everyone told me that the quality of the surgeon makes a big difference. She's a GI surgeon at Brigham and Womens and does the surgery for Dana Farber. Dana Farber is either ranked 1 or 2 in Boston and B&W has been ranked in the top ten hospitals in the US. I did check out her background and she seems top notch. The local folks suggested a a few surgeons closer to home but I don't think that they're specialty surgeons (in that they only do GI work).
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

mozart13
Posts: 102
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby mozart13 » Fri Jul 21, 2017 6:57 pm

Hi Mike,
not an easy situation, of course one wants to start therapy asap.

I had CT and MRI before radiation as staging proccess, but the place that did my radiation therapy did short MRI and CT as well of the area where the tumor was, I was told they put images on top of each other , they gave me tatooes as well.
My understanding is that xeloda is better choice than 5fu when it comes to radiation, 5fu spreads every where, where xeloda goes into the cancer cell and acts as turbo to radiation.

I had CT, MRI and colonoscopy after treatment, as restaging, thats when surgeon gave option,
as cancer was no longer detectable.
Pick time for radiation is about 16,17 weeks from start of radiation.

Make sure you dont take xeloda on empty stomach, drink a lots of fluid, protein diet is important, make sure your bladder is full for procedure so it doesnt shrink.

I hardlly had any symptoms during chemo/rad, except being tired at the end of the week.
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Chemo/rad finished end of January 2017, focus was on lymph nodes
Tumor erased, CCR, negative mri, ct, scope, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Lee » Fri Jul 21, 2017 7:49 pm

NHMike wrote:
I did ask the Boston guys about using the locals for Chemo/Rad and they said that it should be fine but everyone told me that the quality of the surgeon makes a big difference. She's a GI surgeon at Brigham and Womens and does the surgery for Dana Farber. Dana Farber is either ranked 1 or 2 in Boston and B&W has been ranked in the top ten hospitals in the US. I did check out her background and she seems top notch. The local folks suggested a a few surgeons closer to home but I don't think that they're specialty surgeons (in that they only do GI work).


Yes you really want the best hospital/treatment center treating you. While my surgeon was kind of new, she was associated with a hospital that was ranked 15 as best hospital in US.

If you want to go with Brigham or Boston for surgery, do it. Getting chemo/rad local is a good choice. Many Onc are willing to work with big name cancer center. Big name cancer center calls the shot and local Onc follows the plan. Remember you are in the driver seat.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Jul 21, 2017 9:47 pm

mozart13 wrote:Hi Mike,
not an easy situation, of course one wants to start therapy asap.

I had CT and MRI before radiation as staging proccess, but the place that did my radiation therapy did short MRI and CT as well of the area where the tumor was, I was told they put images on top of each other , they gave me tatooes as well.
My understanding is that xeloda is better choice than 5fu when it comes to radiation, 5fu spreads every where, where xeloda goes into the cancer cell and acts as turbo to radiation.

I had CT, MRI and colonoscopy after treatment, as restaging, thats when surgeon gave option,
as cancer was no longer detectable.
Pick time for radiation is about 16,17 weeks from start of radiation.

Make sure you dont take xeloda on empty stomach, drink a lots of fluid, protein diet is important, make sure your bladder is full for procedure so it doesnt shrink.

I hardlly had any symptoms during chemo/rad, except being tired at the end of the week.


Thanks for the tips. They do require you to drink 20 oz of water an hour before the radiation treatment.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Jul 21, 2017 9:53 pm

Lee wrote:
NHMike wrote:
I did ask the Boston guys about using the locals for Chemo/Rad and they said that it should be fine but everyone told me that the quality of the surgeon makes a big difference. She's a GI surgeon at Brigham and Womens and does the surgery for Dana Farber. Dana Farber is either ranked 1 or 2 in Boston and B&W has been ranked in the top ten hospitals in the US. I did check out her background and she seems top notch. The local folks suggested a a few surgeons closer to home but I don't think that they're specialty surgeons (in that they only do GI work).


Yes you really want the best hospital/treatment center treating you. While my surgeon was kind of new, she was associated with a hospital that was ranked 15 as best hospital in US.

If you want to go with Brigham or Boston for surgery, do it. Getting chemo/rad local is a good choice. Many Onc are willing to work with big name cancer center. Big name cancer center calls the shot and local Onc follows the plan. Remember you are in the driver seat.

Good luck,

Lee


Hello Lee,

My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time. I'm not sure if that's not the case right now. I asked the surgeon if part of the mass could be removed before then but she said that it's usually not done. I do have some laxatives that I could try to see if stuff can get around it but I'm wondering if I should look into getting something done sooner if I have an emergency. I really wish that I was through the processing stuff already right now but I don't see how I could have sped things up that much doing the second opinion stuff. I'll just be careful this weekend and may try to get something done Monday.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Jacques » Sat Jul 22, 2017 3:44 am

NHMike - I sent you a PM.

To check your PM Inbox, click on the link below:

http://coloncancersupport.colonclub.com/ucp.php?i=pm&folder=inbox

I think it would help if you could create a signature file to summarize your situation in a few short lines. A link for doing that is here:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
How to Select a Surgeon
List of Forum Features
Colorectal Cancer Stages (TNM)

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Lee » Sat Jul 22, 2017 4:11 pm

NHMike wrote:
Hello Lee,

My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time.


Stick with a low fiber diet until radiations starts working. If you decide to go on a liquid diet, be sure to drink some protein, vitamins (like Ensure) type shakes.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
ocstacy
Posts: 207
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby ocstacy » Mon Jul 24, 2017 1:12 am

The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.


Good evening,

My mother has the same diagnosis as you and Stage. She is Stage 3A. She was diagnosed May 2017 and is on week 3 of XELODA. She was tolerating XELODA pretty well up until this past weekend. She is also older than you, age 77 with osteoporosis. The weekends for some reason make her feel more fatigue. She is eating and keeping her weight up. I noticed after this weekend, she is sort of complaining of her feet getting hot and itchy, which is another side effect from the drug. I bought her the best lotion, socks, pants, fragrance free lotion, body wash, under wear, Imodium, aquaphor, etc, etc. The diet was high fiber prior to Radiation TX. 13 days after her RAD TX, she started to go opposite to Diarrea. Now she has to stop taking stool softners and change her diet to BRAT diet.. more white carby foods. My mom can't really go anywhere as she has to be near a toilet as she feels like she has to go but nothing comes out, or something comes out. I wish I could just help her feel better. Sad to seer in pain and struggling but who says it's easy. She has until Aug 16 to complete this neoadjuvant therapy.
I was able to help my mother with her insurance, and now she is covered at 100% with no co pays at the hospital and her meds are covered. I fought real hard to do this for my dear mother who has barely any income or social security. I researched and interviewed patients of the best colorectal surgeons on the west coast, we live CA. I found a USC colorectal surgeon @ KECK USC. He told my mom and I, that he would be able to hand sew her a new rectum and avoid having a permanent colostomy. I really really LOVED this surgeon and so glad that I did my research.
Don't think you will go soon. There are people with full response or NED (No Evidence of Disease) You can get through this. Cancer is scary. I used to work at the RAD ONC.department at a hospital. It was depressing as I mainly worked with palliative patients. Chemo has changed since then and so has TX.

I live two houses down from her, a really silly situation. My brother will not allow me to enter my parents home as he own their home now and I am upset about it. So since I found out I called APS, and I have contacted attorneys( sorry for the rant!) As a daughter of two elderly parents, please make sure you have a trust and will and you make everything equal with your children. My parents never had one and older brother really threw me under the bus when he moved in with my parents. He put their home in his name and wants nothing to do me cause I found out and I had to call APS. Now we hate each other. My mom is starting to give me her jewelry, etc, etc. Always good to have a plan of course. I will pray for you and as I was told by my mom's oncologist, Xeloda is prob the lightest oral chemo drug, there are many other's that are much more harsh. You can do it. Find a a good colorectal surgeon!! :D
Caregiver/daughter to dear mother age 77, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Chemo Xeloda post-surgery following reversal 2018
Me: Colonoscopy age 38. 08/17 Benign polp.
Hemmy's post partum:roll:

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Jul 24, 2017 11:08 am

Jacques wrote:NHMike - I sent you a PM.

To check your PM Inbox, click on the link below:

http://coloncancersupport.colonclub.com/ucp.php?i=pm&folder=inbox

I think it would help if you could create a signature file to summarize your situation in a few short lines. A link for doing that is here:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597


Okay. I did that. Let me know if it's insufficient.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Jul 24, 2017 11:13 am

Lee wrote:
NHMike wrote:
Hello Lee,

My concern is that the mass keeps getting bigger in the 9 days before I start radiation and that I can't poop in that time.


Stick with a low fiber diet until radiations starts working. If you decide to go on a liquid diet, be sure to drink some protein, vitamins (like Ensure) type shakes.

Lee


I've heard that the benefit of a high-fiber diet is that it makes the stool softer at the expense of more volume. I was able to go Saturday morning with some effort and quite a bit came out. It might have been that there wasn't much there before or that it was further on up. I tried going today and it was harder and I took a packet of Miralax which wasn't that productive [yet anyways]. I may be better off just waiting for a while until I feel pressure.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

NHMike
Posts: 690
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Jul 24, 2017 11:41 am

ocstacy wrote:
The surgeon explained potential loss of function - it might be a permanent bag or not. The cancer is in one of the muscles on the side - if it's too far in, then permanent bag, otherwise maybe not. She wants an MRI after the chemo/radiation. She can then tell if there isn't enough room to avoid the bag from the MRI. But, she might also make that determination once she gets in. So I will wake up with one or the other. At this point, I'm more or less in acceptance mode as it feels like just surviving would be some success.


Good evening,

My mother has the same diagnosis as you and Stage. She is Stage 3A. She was diagnosed May 2017 and is on week 3 of XELODA. She was tolerating XELODA pretty well up until this past weekend. She is also older than you, age 77 with osteoporosis. The weekends for some reason make her feel more fatigue. She is eating and keeping her weight up. I noticed after this weekend, she is sort of complaining of her feet getting hot and itchy, which is another side effect from the drug. I bought her the best lotion, socks, pants, fragrance free lotion, body wash, under wear, Imodium, aquaphor, etc, etc. The diet was high fiber prior to Radiation TX. 13 days after her RAD TX, she started to go opposite to Diarrea. Now she has to stop taking stool softners and change her diet to BRAT diet.. more white carby foods. My mom can't really go anywhere as she has to be near a toilet as she feels like she has to go but nothing comes out, or something comes out. I wish I could just help her feel better. Sad to seer in pain and struggling but who says it's easy. She has until Aug 16 to complete this neoadjuvant therapy.
I was able to help my mother with her insurance, and now she is covered at 100% with no co pays at the hospital and her meds are covered. I fought real hard to do this for my dear mother who has barely any income or social security. I researched and interviewed patients of the best colorectal surgeons on the west coast, we live CA. I found a USC colorectal surgeon @ KECK USC. He told my mom and I, that he would be able to hand sew her a new rectum and avoid having a permanent colostomy. I really really LOVED this surgeon and so glad that I did my research.
Don't think you will go soon. There are people with full response or NED (No Evidence of Disease) You can get through this. Cancer is scary. I used to work at the RAD ONC.department at a hospital. It was depressing as I mainly worked with palliative patients. Chemo has changed since then and so has TX.

I live two houses down from her, a really silly situation. My brother will not allow me to enter my parents home as he own their home now and I am upset about it. So since I found out I called APS, and I have contacted attorneys( sorry for the rant!) As a daughter of two elderly parents, please make sure you have a trust and will and you make everything equal with your children. My parents never had one and older brother really threw me under the bus when he moved in with my parents. He put their home in his name and wants nothing to do me cause I found out and I had to call APS. Now we hate each other. My mom is starting to give me her jewelry, etc, etc. Always good to have a plan of course. I will pray for you and as I was told by my mom's oncologist, Xeloda is prob the lightest oral chemo drug, there are many other's that are much more harsh. You can do it. Find a a good colorectal surgeon!! :D


Thank-you for your reply as it deals with several issues that I've been thinking about.

I'm impressed with how your mother is doing at her age. It sounds like you've done a great job with eldercare in helping her out with the financial stuff. My mother is 95 and she had a heart attack a few years ago which she wasn't expected to survive but she is still alive living in her own home with various forms of help. We've had to do a number of things for her financially to make things work including making sure that her insurance is right and that her bills are paid on time. I know how difficult dealing with medical bills, insurance and coverage issues are and I imagine that it was very time-consuming for you.

I've had on and off problems with constipation in the past and I think that the opposite problem is easier to deal with - but that's me. I know how to avoid getting dehydrated as it has been an issue with working out in the past for me and I've had lots of discussions with other athletes on it in the past and how to deal with it.

As far as wills go, I have my wife, son and daughter. My son is doing quite well in his career and I was thinking that he would get less than my daughter. We spent a lot more on his education than we did with our daughter so we kind of owe her some big bucks. I need to talk to my wife about things too. She basically has told me not to leave her alone with the kids. I have no intention of doing that but I'm not in full control.

Thank-you for your prayers. I've been spending a lot of time there too. And hymns of course.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

prs
Posts: 105
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby prs » Mon Jul 24, 2017 7:47 pm

Mike, if you are still concerned the tumor is blocking you up....my colonoscopy prep includes 24 hours of a clear liquid diet followed by drinking a gallon of MiraLax solution at a rate of one 8 oz glass every ten minutes. Essentially this turns the entire contents of your colon to a watery liquid, and you become a human fire hose, it's like you are peeing out of your ass. :wink: I don't think you need to drink the whole gallon, I find it starts working after about 9 glasses or 90 minutes. :D
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


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