Recent diagnosis

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babycatcher
Posts: 3
Joined: Fri Feb 26, 2016 5:46 pm

Recent diagnosis

Postby babycatcher » Sat Feb 27, 2016 6:49 pm

Hi,

After having blood in my stools for many months and thinking it was some kind of IBS or colitis, I had a colonoscopy on 1/5/16 and was diagnosed with T3N1 rectal cancer on 1/15 - about 8 cm inside, near the sigmoid. It's been a whirlwind since, seeing a billion doctors and surgeons and just recently getting a second opinion from UCSF.

The local oncologist says 5 1/2 weeks of chemo and radiation, then surgery, then 12 rounds of IV chemo. When I went to UCSF, they said the same except doing a second surgery after the 12 rounds of chemo - they said that the new standard is to do the first surgery to remove 1-1.5 ft of colon, then temporary bag, then second surgery to put everything back together after the 12 rounds of chemo. The surgeon says this is the new standard and that they are seeing more success with this and less changes that there are complications resulting in a permanent bag.

The UCSF oncologist is encouraging me to do the PROSPECT trial based on a Dutch study saying that we are overtreating rectal cancer. This trial is 6 rounds of FOLFOX, surgery, then 6 rounds of FOLFOX again. (Then a second surgery if that's what I agree too.) No radiation on this protocol, which is what I want. I felt very strongly about not having radiation and I also understand that it's very damaging to the integrity of the tissue for when they go to do the surgery.

I am a midwife and an herbalist... this whole protocol is a huge challenge for me as it's way outside of my comfort zone and lifestyle. I am currently working with a naturopath and doing nutritional IVs, immune boosters, and using cannabinoids. I have actually seen a big shift with this in the last month and have stopped bleeding and am not currently having diarrhea anymore, which is a huge shift.

So I have a few questions...
Has anyone had the two surgeries or if you've only had the one, how was that for you and were there complications? were you given the choice to do one or two surgeries?
Has anyone gone through the PROSPECT trial? Experiences?
Is anyone using alternative medicine alone or as an adjunct?

Thank you!

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Recent diagnosis

Postby weisssoccermom » Sat Feb 27, 2016 7:07 pm

First of all, welcome.
Secondly, if I understand your post...yes, a large portion of people have the reversal after chemoradiation. So, I'm not sure why the surgeon at USF would say that it isn't standard to have a reversal. Certainly some patients have low tumors and don't have the second/reversal surgery but that is a totally different surgery. It seems as though what the USF onc/surgeons are talking about is forgoing the chemoradiation and just treating the rectal cancer with chemo alone. I did a little research on the PROSPECT study and it is still in the middle of it's five year trial and the results won't be in until 2017. (It started in 2012).

You must understand that if you do decide to do the trial, there is no guarantee that you will get the arm without chemoradiation as it is a random trial. I don't know....chemoradiation has been proven to be very effective and useful in seriously decreasing the risk of local recurrence of rectal cancer. Personally, I went through chemoradiation and while yes, it is true that there can be complications from that treatment, the newer, more targeted therapies have improved significantly with that issue since I had it done almost 10 years ago. I will agree that radiation can do some tissue damage BUT....when surgery is undertaken, most of the radiated tissue.....or at least a large portion of it, is removed in the process. I had a different surgery....after chemoradiation....which left almost all of the rectum intact....meaning that radiated tissue remained and I have had no problems.

Chemoradiation is done for two main reasons....

1. to shrink the tumor making surgery easier
2. most importantly, to sterilize the nodal field in the pelvic region.

Chemo can't do the latter and, IMO, I wouldn't opt not to have it. There are others on this board who may disagree....they've had a bad experience with the radiation and I totally understand that. I just can't ignore the fact that chemoradiation became the 'standard of care' because it showed significant improvement over just chemo in lowering the local recurrence rate.....why would you want to take chances with that?? Others will hopefully chime in....but for me, I will forever be grateful that I had the chemoradiation as it allowed me to proceed with the less invasive surgery.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

babycatcher
Posts: 3
Joined: Fri Feb 26, 2016 5:46 pm

Re: Recent diagnosis

Postby babycatcher » Sat Feb 27, 2016 7:22 pm

I'm not sure what you mean by a reversal.. I am assuming you mean to have the two surgeries - temporary bag and then reversing that surgery to remove the bag and put everything back together?

No one in my local area has mentioned having two surgeries and temp. bag at all - the two GI docs, the local surgeon, the oncologist, the radiologist - all said LAR and one surgery and no one mentioned a temporary bag until I went to UCSF and saw the surgeon there.

I am aware of the fact that I don't know which arm of the trial I would get into but the oncologist said that she has seen such good results from the trial and was impressed with the initial study enough that she would follow that protocol with me if I chose.

I feel so strongly about not having radiation - I can't explain it. It just feels very wrong to do intuitively for me.

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Recent diagnosis

Postby weisssoccermom » Sat Feb 27, 2016 8:39 pm

LAR surgery isn't the same as APR (colostomy surgery). Most patients that have an LAR do have a temp bag and then, later have the reversal surgery (which removes the temp bag...ileostomy). The first surgeon likely just didn't mention it just assuming that a reversal was implied. Sometimes there is no need for a temp ileostomy but most (again, not all) patients who have an LAR do have a temp ileostomy (bag) to allow the anastomosis time to heal.

You have to do what you feel comfortable with. I would want to know how long the study that the onc is referencing has been going on for. Is it one year? Two years? What stages of patients were included in it? Were most stage III and above that had positive clinical nodal involvement? How many of the stage III (you are a stage IIIB based on what you wrote in your first post) were included in the trial results? What did the pathology results indicate after the surgery? What happens if the patient can't tolerate the entire 12 rounds of the oxi? What are the other choices or, likely as it is a trial, there wouldn't be other options. What, if anything, happens if the surgeon can't get clean margins? Rectal cancer, unlike colon cancer, can have recurrences much later (later than the typical 5 year mark)....which is one reason why I wouldn't yet feel comfortable with the study. Looking up the PROSPECT study in the clinical trial database, they started recruiting in 2012....meaning it's not even four years yet since the beginning of that trial. Perhaps if I was a stage II with no lymph node involvement (which I was), I might think differently about it...who knows??

I understand your reluctance about radiation and can't fault you for it because you are the only one who knows what you can feel comfortable with. I want you to understand though, that radiation or not, having the LAR surgery will still result in new and different bowel habits that you will have to get adjusted to. No one can force you to have radiation....trial or not....that is your decision and one that only you know what you can live with.

Good luck with whatever you decide to do.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

User avatar
Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Recent diagnosis

Postby Kick'nAssCancer'sAss » Sat Feb 27, 2016 8:39 pm

Having chemo/radiation before surgery also gives the possibility of a pathological complete response after surgery. In some cases the tumour is completely gone after treatment. It will give a better prognosis going forward. Some studies I have read have percentages as high as 25 - 30% of patients actually achieve a pCR.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Recent diagnosis

Postby weisssoccermom » Sat Feb 27, 2016 8:54 pm

My biggest concern with no radiation to the pelvic region is the vast lymphatic network that you are hoping that systemic chemo alone will take care of. Yes, you may have surgery first and assume that you get rid of all the cancerous nodes, but the surgeon can't possible take all of them out. While chemo is certainly effective in killing cancer cells, some people just don't respond well to it. What will you do if you are one of those people?

I do understand the thinking that perhaps we are overtreating rectal cancer but I am not sure that I would take radiation off the table. My opinion is that chemoradiation, chemo and surgery all have their place in getting rid of the beast.....and for me, I went down the path of a less invasive surgery rather than no radiation. Again, though, you have to do what you feel is best for you...and what you can/can't tolerate. When dealing with the pelvis and its extensive lymphatic system....I wouldn't trust chemo alone to take care of everything.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Recent diagnosis

Postby Lydia666 » Sat Feb 27, 2016 11:22 pm

I did the chemo/ radiation and surgery so far. All in all it was not too bad. I am doing xeloda as adjuvant chemo. Maybe ony 6 cycles. Folfox is quite hard to handle from what i hear- 12 rounds is huge, some people cannot even handle one round. When you do the 5.5 weeks of chemorad, the chemo is only 5fu if it's in an iv or xeloda in pill form- it is less toxic than the folfox which is 5fu plus oxaliplatine.
I would recommend radiation as it was not too bad for me and it shrunk my tumor from 5 cm to 5 mm and if i had any positive nodes, they were burned to death! :) My surgeon believes radiation and surgery are key. The adjuvant chemo is for prevention.
But i also had an epidural for both of my kids :) so I know you are coming from a different perspective.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Recent diagnosis

Postby JudeD59 » Sat Feb 27, 2016 11:55 pm

I was offered the Prospect study when I was diagnosed last April. At that time, not many here on the board were familiar with it. The main reason they are doing this trial is because so many have long-lasting damage from radiation so they are trying to see if they can shrink the tumor just as successfully without using radiation at all. After a lot of research and soul searching, I decided not to do the trial and to do the standard radiation/Xeloda treatment. My main reason was that although my oncologist and surgeon had been seeing great results with the Folfox before surgery instead of radiation, the study hadn't been around long enough for me to be comfortable with it. I explained my reasoning to both doctors and they understood. I have been lucky and haven't had problems from the radiation that I've discovered so far.

It's been almost a year since then, so I'm sure they have more results to show at this point. The decision really is up to you. You have to be comfortable with whatever you decide. But if you feel that strongly about not having radiation, it's not really that great of a risk, in my opinion, to do the study. The results so far have been very good with comparable tumor shrinkage to patients who do the radiation. Just read everything you can find on the study and be absolutely sure before you agree. Even if you decide to participate in the study, you might be assigned to the Xeloda/radiation group anyway and not have the option to do the Folfox before surgery.

Good luck!

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Recent diagnosis

Postby rp1954 » Sun Feb 28, 2016 12:36 am

Is anyone using alternative medicine alone or as an adjunct?
Yes, as adjuncts to oral chemo.

We deal with colon cancer so there's a difference in pre-operational treatment plans, with or without radiation for rectal cancer. We used only CAM before surgery, and then later after surgery, oral chemo with extensive CAM.

...doing nutritional IVs, immune boosters,.... I have actually seen a big shift with this in the last month and have stopped bleeding and am not currently having diarrhea anymore, which is a huge shift.
Yes and Yes. Some people have had substantial partial successes with CAM, still needng surgery and usually some chemo. We have had substantial success with CAM and then chemo+CAM, where we have used 3 drugs: an oral 5FU drug, celecoxib and targeted cimetidine, along with aggressive CAM treatment based on research and measurement, not just rumors and hopes.

These are the blood tests we have found important (my three replies). Blood markers are one of two things I've literally told a doctor, "tonight, right now" - before the first treatment, surgery.

For us, doing extra blood testing has been the investment of a lifetime. The most important set of blood tests are those done before chemo, radiation and surgery, because it's time critical and irreplaceable data. As much as possible, ASAP if already "late" because of some treatment. We take no excuses or objections from anybody on the blood tests; without them we are screwed. We often pay for the extra blood tests ourselves, the first year I didn't even argue with insurance, because it would have slowed us down and sapped critical focus and energy.

Also cimetidine before and during surgery has been critical to us. Most people do 800-1000 mg per day, sometimes up to 1600 mg. Lots of discussion in the archives here and at Life Extension Foundation.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Recent diagnosis

Postby weisssoccermom » Sun Feb 28, 2016 11:13 am

Judy,
Interesting that you have some info on the study. I have to be honest though...the shrinkage wouldn't be the primary endpoint for me. Radiation's main benefit is the ability to sterilize the nodal field to show a much lower local recurrence rate. Every surgeon I spoke to told me about study after study which proved this so for me, radiation's ability to lower that local recurrence rate is a huge factor.

In the years since I have been diagnosed, I have seen too many people do all the chemo, only to have something recur....so while I personally believe in chemo, I'm not sure that I would want to put all my faith in it solely. Time and time again, I heard about local recurrence in the pelvic region and above all else, that was something I wanted to avoid.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Recent diagnosis

Postby JudeD59 » Sun Feb 28, 2016 7:20 pm

weisssoccermom wrote:Judy,
Interesting that you have some info on the study. I have to be honest though...the shrinkage wouldn't be the primary endpoint for me. Radiation's main benefit is the ability to sterilize the nodal field to show a much lower local recurrence rate. Every surgeon I spoke to told me about study after study which proved this so for me, radiation's ability to lower that local recurrence rate is a huge factor.

In the years since I have been diagnosed, I have seen too many people do all the chemo, only to have something recur....so while I personally believe in chemo, I'm not sure that I would want to put all my faith in it solely. Time and time again, I heard about local recurrence in the pelvic region and above all else, that was something I wanted to avoid.


I have info because I was invited to be a member of the study. So they provided me with what info they had at that point. Which wasn't enough to convince me that chemo alone was enough to shrink the tumor and sterilize the nodal field, which is why I chose not to participate in the study and did the radiation/Xeloda. I may be reading your post wrong (It's been a long weekend since my father-in-law passed away last night) but it seems like you think I'm disagreeing with your opinion. Obviously I'm not, since I chose the radiation over the chemo alone. Forgive me if I'm reading you incorrectly. I'm exhausted.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Recent diagnosis

Postby weisssoccermom » Sun Feb 28, 2016 7:23 pm

NO NO.....I was just saying that it's cool that you had actually been 'involved' (sort of) in this study. No, I agree with you 100%. From what I have read, the study hasn't been around long enough for me....what you are saying is exactly what I was trying to say.
I was only pointing out for others that shrinkage alone isn't the only consideration. Sorry if my post came across the wrong way.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Recent diagnosis

Postby JudeD59 » Sun Feb 28, 2016 11:50 pm

weisssoccermom wrote:NO NO.....I was just saying that it's cool that you had actually been 'involved' (sort of) in this study. No, I agree with you 100%. From what I have read, the study hasn't been around long enough for me....what you are saying is exactly what I was trying to say.
I was only pointing out for others that shrinkage alone isn't the only consideration. Sorry if my post came across the wrong way.


No, it's probably me. Like I said, I'm exhausted.

When I joined the forum in April of 2015, one of the first posts I made was about the choice I needed to make whether to do the study or not and you argued strongly against it for the same reasons you are giving now. I spent a couple of weeks doing research and talking with the doctors and my family and chose not to do the study. My doctors said, "If you don't have to do radiation, you don't want to do radiation. It leaves long-lasting scars." So the reasons they are trying this study are good ones. We know from reading posts on here that many members do have life-long problems with damage from radiation and if they can find a method that doesn't involve radiation but gives results that are as good or better, more power to them. The study just hadn't been around long enough for me to be comfortable risking it. I chose to go with the tried and true. But I hope the study ends up being very successful so patients have a choice between radiation/Xeloda or Folfox as neoadjuvant chemo. Having more choices is always better since not everyone tolerates treatments the same.

Judy

(See, I told you I was tired. Obviously I meant neoadjuvant treatment and not adjuvant. Fixed.)
Last edited by JudeD59 on Mon Feb 29, 2016 12:42 am, edited 1 time in total.
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Recent diagnosis

Postby weisssoccermom » Sun Feb 28, 2016 11:58 pm

Glad we got that straightened out. I don't want you thinking I'm being a jerk. I also agree that IF this study works and shows LONG TERM success (which, for me, with rectal cancer, would have to be at least 5 - 7 years), then that's great. If I had to do it again, I would still choose the chemoradiation simply because the studies are so strong showing that it is superior in controlling the local recurrence rate. While I understand that frequently patients have complications from the radiation, I would rather have that than the chance of local recurrence. I vividly remember the dire warnings that both surgeons and my onc gave me about what the very real possibilities were with a local recurrence.

Clinical trials are great and I have great respect for those people who are willing to participate. Me, I would have been too chicken....give me the tried and true treatments.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

babycatcher
Posts: 3
Joined: Fri Feb 26, 2016 5:46 pm

Re: Recent diagnosis

Postby babycatcher » Mon Feb 29, 2016 1:46 pm

rp1954 wrote:Is anyone using alternative medicine alone or as an adjunct?
Yes, as adjuncts to oral chemo.

We deal with colon cancer so there's a difference in pre-operational treatment plans, with or without radiation for rectal cancer. We used only CAM before surgery, and then later after surgery, oral chemo with extensive CAM.

[/i] Yes and Yes. Some people have had substantial partial successes with CAM, still needng surgery and usually some chemo. We have had substantial success with CAM and then chemo+CAM, where we have used 3 drugs: an oral 5FU drug, celecoxib and targeted cimetidine, along with aggressive CAM treatment based on research and measurement, not just rumors and hopes.

These are the blood tests we have found important (my three replies). Blood markers are one of two things I've literally told a doctor, "tonight, right now" - before the first treatment, surgery.

For us, doing extra blood testing has been the investment of a lifetime. The most important set of blood tests are those done before chemo, radiation and surgery, because it's time critical and irreplaceable data. As much as possible, ASAP if already "late" because of some treatment. We take no excuses or objections from anybody on the blood tests; without them we are screwed. We often pay for the extra blood tests ourselves, the first year I didn't even argue with insurance, because it would have slowed us down and sapped critical focus and energy.


Thank you for answering my questions. I appreciate it. I am trying to navigate the various blood tests that various people are suggesting so this list is helpful.

Were there specific CAM treatments that you felt are/were the most helpful?


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