Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal radiation on a moving target?

Postby NHMike » Thu Jul 27, 2017 6:03 am

Jacques wrote:
NHMike wrote:... 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... 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 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.
.

It looks like you will be starting your chemo/radiation sessions soon. I was wondering if your local radiation oncologist has commented on possible difficulties with administering radiation to a tumor that may prolapse during the radiation session. Normally, during an IMRT / IGRT radiation session they need for the tumor to remain immobile so that the radiation can be aimed properly. Does their equipment have the capability to follow a prolapsing tumor if it starts moving aound during the radiation session?

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445


I doubt that the equipment can do this and the radiation would likely affect the anal canal which isn't the target. I don't really think that it's going to move around during the treatments though. It took a lot of effort for it to come out and hasn't come out since [which somewhat worries me].
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

James65
Posts: 353
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Thu Jul 27, 2017 8:37 am

Hi Mike,
It seems you are getting a lot of information so I won't add too much here other than I was diagnosed with a rectal tumor in 2006 and went through pretty much the exact same treatment as you. I also have a colostomy and I live in NH too (Exeter) so feel free to let me know if you'd like to get in touch.

One piece of advice for the chemo/radiation is the chemo is a light dose so not much effect other than some tiredness, but the radiation can cause pain around the anus from burning (it is also a sensitive area). The radiation oncologist will recommend a salve or cream to help you, which is good, but you may get recommendations from others that could hamper the radiation. I would also get a sits bath. I had one and it helped a lot.

The good news is that the radiation is pretty effective.

Best,
James
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 27, 2017 9:10 am

James65 wrote:Hi Mike,
It seems you are getting a lot of information so I won't add too much here other than I was diagnosed with a rectal tumor in 2006 and went through pretty much the exact same treatment as you. I also have a colostomy and I live in NH too (Exeter) so feel free to let me know if you'd like to get in touch.

One piece of advice for the chemo/radiation is the chemo is a light dose so not much effect other than some tiredness, but the radiation can cause pain around the anus from burning (it is also a sensitive area). The radiation oncologist will recommend a salve or cream to help you, which is good, but you may get recommendations from others that could hamper the radiation. I would also get a sits bath. I had one and it helped a lot.

The good news is that the radiation is pretty effective.

Best,
James


Thanks, it would certainly be nice to have a local contact. I'm in the Nashua area.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 27, 2017 9:22 am

They are shipping out four weeks of the Xeloda as that's all the insurance company will cover per prescription. I then refill it after the third week. The prescription is for 25 days while the radiation is for 28 days so I have to ask the oncologist. I was on the phone with the mail-order pharmacy (had a great deal of difficulty understanding the person) hashing the order out. I had thought that the nurse had taken care of the order and expected it today or tomorrow but it appears that I had to place the order. I'm at home waiting for it and they called my office number - fortunately my office number forwards voicemail to email. At any rate, it's supposed to arrive tomorrow so I should be set to start treatment on Monday.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

scohow66
Posts: 16
Joined: Fri Apr 07, 2017 9:54 am

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

Postby scohow66 » Thu Jul 27, 2017 3:47 pm

Mike,

I also went thru treatment at B & Wo's boston as well as DFCI (south shore location). I did the 28 radiation treatments (IMRT) along with 24x7 5FU via portable infusion pump. Finished all that end of January and had Robotic LAR end of April with temp ileostomy. Scheduled for take down in October. Not sure who your surgeon is, but happy to provide some further detail if you want to email me (scohow@msn.com).

Also, I work in the heath insurance industry. You should not pay individual copays for each radiation treatment if you have an HMO based plan. For PPO you pay a percent of things beyond deductibles, etc.. You pay the days you actually see the dr. You will have a weekly touch base with radiation onco and med onco. I had a deductible and hit it with the first treatment...rest was copays, but not bad overall.

Its a long road and every case is different, but I have come thru it and continue to heal.

Best of luck!

Scott
51 Year old male
Dx with RC 10/2016 (T2N0M0)
Port implanted 11/2016
Rad with 5FU December 2016-January 2016
LAR robotic with temp loop ileo 4/2016
ypT0N0M0 - cPR to chemo/rad

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jul 27, 2017 4:39 pm

scohow66 wrote:Mike,

I also went thru treatment at B & Wo's boston as well as DFCI (south shore location). I did the 28 radiation treatments (IMRT) along with 24x7 5FU via portable infusion pump. Finished all that end of January and had Robotic LAR end of April with temp ileostomy. Scheduled for take down in October. Not sure who your surgeon is, but happy to provide some further detail if you want to email me (scohow@msn.com).

Also, I work in the heath insurance industry. You should not pay individual copays for each radiation treatment if you have an HMO based plan. For PPO you pay a percent of things beyond deductibles, etc.. You pay the days you actually see the dr. You will have a weekly touch base with radiation onco and med onco. I had a deductible and hit it with the first treatment...rest was copays, but not bad overall.

Its a long road and every case is different, but I have come thru it and continue to heal.

Best of luck!

Scott


Thanks for the shoutout from someone local.

Sounds like yours went smoothly up until now. I realize that term is relative. My surgeon is Melnitchouk and she seems very knowledgeable in GI surgery.

I asked the radiologist and he said that they don't charge copays. My out-of-pocket so far is around $1,600 and I expect to hit max of $2K sometime soon. The Xeloda was $180 for the first four weeks and likely another $180 for the second batch. So I've been racking up some bills the past five weeks. The services bills are around $35,000 and I'd guess that the actual drug bills are not too bad given that they use a generic Xeloda.

Thanks for your story.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 28, 2017 6:10 am

I had a tough time again last night as I was feeling awful but it may be due to not enough calories because of worrying. So I had some food this morning and feel a little better. I went to the Brigham and Womens Patient Portal out of curiosity and found more detailed information from the lab reports and doctors. One thing that I found is that Immunohistory testing reports on the four genes for Lynch's Syndrome which is what MicroSatellite Instability testing does so I looked at a paper comparing the two approaches. IHS appears to be the standard first-line screening for this stuff and checking for all four results in comparable success to MSI testing. But there are cases where one approach catches examples that the other one doesn't.

So this was in one of the notes of one of my visits:

6/23/2017: Presented to ...... with rectal bleeding
CT abdomen and pelvis: large filling defect in rectosigmoid area
Colonoscopy: mass in the rectumfrom just above the dentate line to the 12cm mark, involving 75% of the circumference (otherwise limited by poor prep)
Path: invasive adenocarcinoma, low grade (well to moderately differentiated). IHC without loss of MLH1, PSM2, MSH2 or MSH6.

I think that the four genes are indicative of Lynch's so the "without loss" seems to indicate that I don't have Lynch's or MSI-High. I forwarded the information to the pathologist that's doing the MSI testing.

The other thing, unrelated to the genetic stuff, is that the mass was 75% and that was on 6/23. I can feel that it's a lot tighter now than it was back then which definitely explains my overall discomfort. I'm trying to figure out if I should go to an ER to see if they'll remove some of it or just sweat it out until chemorad starts. I asked about this in another forum and a few people did go to the ER for emergency surgery but I don't have the details on how things turned out. At any rate, it's an option. I am just going to eat and try to BM this weekend - if I can, then I should be okay. If not, well, I'll find out.

Dry run on the radiology stuff today.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

veckon
Posts: 31
Joined: Thu Jul 27, 2017 7:44 am

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

Postby veckon » Fri Jul 28, 2017 8:23 am

I’m sorry you’re worried. I know how stressful this can be.

So as long as your tumor isn’t fully obstructing, you shouldn’t need to go to the ER. When they did the colonoscopy, did they tell you if it was partially or fully obstructive? I have a feeling they would have done something already surgically if it was obstructed though.

My tumor is very low and large, it basically is the length of the entire rectum, but only partially obstructive so I can still go. But when the pain is there, each and every bowel movement was agony for me because the upper anal sphincter would basically strangle the tumor when it contracted. Do you experience similar pain during a BM? I had to fight through the pain to keep regular. It was like a war 10+ times or more a day but somehow I made it through.

They won’t or rather shouldn’t remove a tumor haphazardly. Honestly, I would be very wary about anyone but an expert colorectal surgeon specializing in cancer operating anywhere you have a tumor. It risks spreading the disease if they don’t know what they are doing.

Get stool softeners, Miralax, milk of magnesia etc. Use them regularly if your doctor gives the go ahead. They will help you pass even with partial obstruction and pain. Good luck, if you have any questions let me know. Hopefully my experience in suffering can prove useful :D
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

James65
Posts: 353
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Fri Jul 28, 2017 8:45 am

Are your oncologist (radiation and medical) and GI surgeon attached or in some way connected to the ER that you would go to? If not and things don't improve, you could think about going to the ER at the hospital where you are receiving treatment (the surgeon's hospital would maybe be best). That way the people who know your case best and risks to a preemptive surgery would be able to weigh in. During my radiation treatment, I had a terrible experience with an ER doc because he wouldn't speak to my radiation oncologist.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 28, 2017 9:21 am

Hello James,

I was thinking about going into Boston last night to Brigham and Womens which is where my surgeon is. The hardest part about doing that would be ... parking. I considered Lahey Clinic in Burlington as well. B&W would have been the best choice. I've decided to stick it out for now. A poster on another forum with a similar course and two weeks ahead of me took Miralax for constipation and used a water enema to help the stools around the mass. He's still using the water irrigation two weeks into the chemo and radiation but he can feel the tumor shrinking. So maybe he won't need to use it as time goes on. I'll check with my GI doc and Onco Nurse again on irrigation if I can reach them.

I feel a lot better right now after some breakfast - not eating is messing with my mind and body. We'll see how things go in the bathroom later on.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 28, 2017 10:44 am

veckon wrote:I’m sorry you’re worried. I know how stressful this can be.

So as long as your tumor isn’t fully obstructing, you shouldn’t need to go to the ER. When they did the colonoscopy, did they tell you if it was partially or fully obstructive? I have a feeling they would have done something already surgically if it was obstructed though.

My tumor is very low and large, it basically is the length of the entire rectum, but only partially obstructive so I can still go. But when the pain is there, each and every bowel movement was agony for me because the upper anal sphincter would basically strangle the tumor when it contracted. Do you experience similar pain during a BM? I had to fight through the pain to keep regular. It was like a war 10+ times or more a day but somehow I made it through.

They won’t or rather shouldn’t remove a tumor haphazardly. Honestly, I would be very wary about anyone but an expert colorectal surgeon specializing in cancer operating anywhere you have a tumor. It risks spreading the disease if they don’t know what they are doing.

Get stool softeners, Miralax, milk of magnesia etc. Use them regularly if your doctor gives the go ahead. They will help you pass even with partial obstruction and pain. Good luck, if you have any questions let me know. Hopefully my experience in suffering can prove useful :D


The report was that the tumor was blocking 75% and this was five weeks ago. It's definitely harder to poop today though not impossible. I got one in late morning which has me feeling a lot more comfortable that I'll be able to make it next week. This was even without some irrigation which I'm holding in reserve. I think that I'm going to go with daily Miralax and see how that goes.

I would not say that I have the level of pain that you do. I have to put in effort to push it around though - I can definitely feel that. What can be painful is trying to go when there isn't anything there. I don't have a good feel for when there is something there or there isn't because of the sensations of fullness that the tumor causes.

I am glad that you made it through.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 28, 2017 6:17 pm

I went to the Radiology Center for the dry run. I wasn't sure why they needed one but I drank up from the bottle that they gave me one hour before and I felt like my bladder was bursting. They allowed me to go to the bathroom to relieve some of the pressure which helped. But then it was another 15 minutes or so while they took some pictures and a doctor examined them. I think that I already had a lot in my bladder before I started drinking. They said to maybe cut down on the water a bit for the real deal on Monday.

The person that attended to me today told me to have a nice weekend. I had to think about this as I really haven't enjoyed anything for the past five months. Maybe a walk in the woods would do.

I want to read up on some other folks experiences with radiation so I'll do a little searching around the forum this weekend.

I got home and did a second BM and then a third, watery one that was surprisingly easy. That one was the MiraLax.

I paid some nice compliments to my wife today after I expressed that I was feeling pretty lonely and depressed and she expressed that this isn't easy for her either. I am putting some effort into making sure my family is covered if I'm not around - something that I should have ready even if I didn't have cancer.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

WarriorSpouse
Posts: 68
Joined: Tue Aug 16, 2016 9:02 pm

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

Postby WarriorSpouse » Sat Jul 29, 2017 10:03 am

Mike,

I am sorry to read what you are going through, but I came across your profile after reading on AT's thread... I have some suggestions to questions you asked about care and co-pays.

My wife's experiences at Dana Farber have been the same and excellent for 1st class care and treatment plans.

As for Mass General Hospital affiliates in NH, Wentworth Douglas in Dover, NH would be an excellent option for you. They have MGH oncology staff in this satellite location with excellent doctors with experiences from Dana Farber and Sloan Kettering. Check them out... I hope it is close to you.

Exeter Hospital is also a Partners affiliated oncology department, although for CRC and radiation care, I hear great reviews from Wentworth Douglas. This would be my preferred recommendation if you want MGH care in NH for CRC.

Also, Dana Farber has an excellent satellite location in Londonderry, NH.

As for co-pay and deductibles, I can only suggest to set up a direct deposit to a separate savings account connected to your checking account. If your copay / deductible is $6,000 per year then direct deposit $500 per month into this account like a car payment. Sell something or take from other savings the seed money to start this HC escrow account, and budget it as a fixed payment in the family budget. Down size house to condo (or townhome) if needed. Maybe look close to Dover, NH for an easier commute to DWH and travels to Boston via I95.

This is all I got for now... Like we see from reading AT's posts, keep researching and reading... We are all here for you.

Best wishes on your journey forward.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

NHMike
Posts: 163
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Jul 29, 2017 10:14 am

WarriorSpouse wrote:Mike,

I am sorry to read what you are going through, but I came across your profile after reading on AT's thread... I have some suggestions to questions you asked about care and co-pays.

My wife's experiences at Dana Farber have been the same and excellent for 1st class care and treatment plans.

As for Mass General Hospital affiliates in NH, Wentworth Douglas in Dover, NH would be an excellent option for you. They have MGH oncology staff in this satellite location with excellent doctors with experiences from Dana Farber and Sloan Kettering. Check them out... I hope it is close to you.

Exeter Hospital is also a Partners affiliated oncology department, although for CRC and radiation care, I hear great reviews from Wentworth Douglas. This would be my preferred recommendation if you want MGH care in NH for CRC.

Also, Dana Farber has an excellent satellite location in Londonderry, NH.

As for co-pay and deductibles, I can only suggest to set up a direct deposit to a separate savings account connected to your checking account. If your copay / deductible is $6,000 per year then direct deposit $500 per month into this account like a car payment. Sell something or take from other savings the seed money to start this HC escrow account, and budget it as a fixed payment in the family budget. Down size house to condo (or townhome) if needed. Maybe look close to Dover, NH for an easier commute to DWH and travels to Boston via I95.

This is all I got for now... Like we see from reading AT's posts, keep researching and reading... We are all here for you.

Best wishes on your journey forward.
WS


I was thinking of contacting you as "an hour outside Boston" might be in my area. I'm already set up with Dartmouth Hitchcock Norris Cotton for Oncology and Radiation Center of Greater Nashua. The guys that I spoke to at Dana Farber said that they should be fine for the chemo and radiation. I'm going with Brigham and Womens for surgery.

I'm hoping that MGH partners or buys out some hospitals along Route 3. I was aware of DFCB in Londonderry but the Nashua Radiation place is only 10 minutes away.

My max out-of-pocket is $2,000 for services and I'm almost there already. I think that the chemo drugs aren't included in that. Most of these places take credit cards and mine has been getting a good workout.

I was really in a hurry to get started as the tumor is getting large and causing discomfort. It was already a lot of work getting things started locally. I thought it interesting that your wife is on maintenance chemo and I was hoping to look forward to a time when this is at an end but I realize that bad stuff can happen even after you knock it down once.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

WarriorSpouse
Posts: 68
Joined: Tue Aug 16, 2016 9:02 pm

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

Postby WarriorSpouse » Sat Jul 29, 2017 10:35 am

I think you have a good plan... Keep Dana Farber in the mix. MGH v. DF, I'd take DF, and we have when having to chose a plan. You live in a great area with excellent options.

After your tumor shrinks with radiation, you may be ale to seek more comfortable treatments. As for a $2K copay, even better than $6K!.. All chemo, even pills, should be covered by HC because they simulate oncology outpatient care. Have them mailed to you via Oncologist prescription. The costs are less expensive. Always call your insurance to verify and/or use an oncology nurse navigator to assist you. Most hospitals in the area have one on staff to help you as a cancer care advocate.

Good luck... Keep us posted!
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot


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