FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

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lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Tue May 01, 2018 1:08 pm

Hi. This staging process has taken me forever. So much I would like to ask everyone here, but have time sensitive questions.

I'm supposed to start chemo on Monday. At my chemo ed yesterday, the oncologist popped in and told me about a clinical trial. (I was surprised because I had been told previously that I wasn't eligible for any trials.) For this trial, I would be randomly placed in one group that has chemo first (4 mos. FOLFOX) and then 5-6 wks radiation (which is essentially the same treatment we've been talking about since I started). The other group would get the opposite - the radiation first, then chemo.

Given my mouth was already hanging open from the chemo ed, this was a shock to the system - and also seemed like (felt like!) an aggressive sales job. Not much information in person but sent home with a trial info handout and "24-48 hrs" to read it and decide. They've already scheduled me with an appt with a radiologist tomorrow and seem as if they are in a big rush re: the trial.

MEANWHILE, an MD I know who had colon cancer herself (and whose husband is a general surgeon who did diligent research on colorectal cancer surgeons before her surgery) urged me to get a 2nd opinion with the surgeon she used at the Cleveland Clinic. (I am currently working with a cancer center within a teaching university.) The surgeon appt at Cleveland was supposed to be today but he had an emergency and is out of town this week so they called me Friday and rescheduled to end of NEXT week (the end of the week I start chemo). The Cleveland surgeon said on Friday that it was "ok" to begin chemo before I meet him (BUT this was before the clinical trial came up yesterday).

So - this clinical trial thing complicates the timing of my second opinion. If I start chemo, I am no longer eligible for the trial. So, I am debating whether to delay chemo 1 week (possibly 2, if CC wants to go to their tumor board) in order to get a solid second opinion at Cleveland Clinic. The clinical trial is happening at Cleveland too, FWIW, so they may have opinions on whether I am suitable for this trial as well. If I don't put off chemo next week, then I won't have the option - even if the team there recommends it. (Meanwhile, I've waited a month+ to be staged - on top of 6 months of blood in my stool - so I feel like I've already waited too long!)

So, there's the timing issue. THEN there's the actual trial decision. It's basically either getting what they had planned for me anyway (chemo then radiation) OR radiation firs - but I will have no control over which group I am in. (There's also the non-operative management aspect of the trial, but they said that's my choice - and I've read just enough here on this forum to know that is a BIG decision.) My questions are really about these two options and the safety and efficacy of each option for someone with my type of tumor/health/etc. (This study has been ongoing since 2013.) While I assume they can't recommend what I do, can't they tell me, in their experience, what they've seen with patients (with similar situations) who have done one or the other first? (I know nothing, but based on the little reading I have done about radiation, it seems to really do a number on your rectum. So, why would I want to wreck my rectum before chemo - when I will either be constipated or have diarrhea? Again, I have not started either so I have no clue what either is like.)

Everything this last month has happened so fast. There's no time to breathe, let alone ponder options. I feel like this is an important one though - and I should pause, get my second opinion, and not have any regrets about being pushed into one or the other. Then again, I'm nervous about putting this off and part of me just wants to start chemo and forget about the trial (esp given I may be doing the same thing as I would have anyway).

Thanks so much for any input.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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O Stoma Mia
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Location: On vacation. Off-line for now.

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby O Stoma Mia » Tue May 01, 2018 2:46 pm

Just a few questions at this point:

Do you have the number/identifier of the clinical trial so that we can look it up in the Clinical Trials registry?

What are the plans for surgery? Are they planning on surgery after both the Folfox and the radiation sessions have been completed? Does the clinical trial allow that?

Are you sure that the staging is correct? My understanding of staging is that if the tumor is invading other organs, then this would be at least a T4aN0M0, or T4bN0M0 staging, i.e., Stage IIb or Stage IIc

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby NHMike » Tue May 01, 2018 5:19 pm

A very hard decision.

I had a much larger tumor (100 cm^3) and I think that I'd credit the radiation for doing more of the work than the Xeloda though the Xeloda likely checked any spread. My personal opinion is that the 5FU/Oxaliplatin was tougher on my than the Xeloda/Radiation. I think that either approach will be challenging but you may get to skip surgery at the end.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Wed May 02, 2018 9:14 am

O Stoma Mia wrote:Just a few questions at this point:

Do you have the number/identifier of the clinical trial so that we can look it up in the Clinical Trials registry?

What are the plans for surgery? Are they planning on surgery after both the Folfox and the radiation sessions have been completed? Does the clinical trial allow that?

Are you sure that the staging is correct? My understanding of staging is that if the tumor is invading other organs, then this would be at least a T4aN0M0, or T4bN0M0 staging, i.e., Stage IIb or Stage IIc


Staging: Stage 2 because they told me they wanted to a last minute liver biopsy to determine if it is Stage 2 or Stage 4. While liver biopsy results are not final, they asked pathologist for a "sneak preview" and he said it doesn't look like cancer (FWIW). *I think they did this in order to clear me for the clinical trial but it is good to know. And the discussion about the uterine wall was vague - I don't think it has "invaded" per se but they were describing how it's growing and referred to the wall up against the uterus. So, maybe I got that wrong.

The Clinical Trial is 13-213. I am new to all of this but he DID say it would be MY decision about surgery at the end. I am allowed to stop study at any time.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Wed May 02, 2018 9:19 am

NHMike wrote:A very hard decision.

I had a much larger tumor (100 cm^3) and I think that I'd credit the radiation for doing more of the work than the Xeloda though the Xeloda likely checked any spread. My personal opinion is that the 5FU/Oxaliplatin was tougher on my than the Xeloda/Radiation. I think that either approach will be challenging but you may get to skip surgery at the end.


Hi NHMike.
What does 100cm>3 mean? And I'm not sure what Xeloda is? Is that the chemo I will take with radiation?

What do you think would be the downside of starting with radiation? Has anyone on here done it that way?

Sounds like lots of fun. You people are a tough bunch. I feel so good now (no symptoms really but blood in stool) and am healthy for the most part (outside of stress) - so I dread this. I had two babies naturally and that was enough pain for a lifetime. I guess we do what we have to do.
Thanks...
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby NHMike » Wed May 02, 2018 9:28 am

lakeswim wrote:
NHMike wrote:A very hard decision.

I had a much larger tumor (100 cm^3) and I think that I'd credit the radiation for doing more of the work than the Xeloda though the Xeloda likely checked any spread. My personal opinion is that the 5FU/Oxaliplatin was tougher on my than the Xeloda/Radiation. I think that either approach will be challenging but you may get to skip surgery at the end.


Hi NHMike.
What does 100cm>3 mean? And I'm not sure what Xeloda is? Is that the chemo I will take with radiation?

What do you think would be the downside of starting with radiation? Has anyone on here done it that way?

Sounds like lots of fun. You people are a tough bunch. I feel so good now (no symptoms really but blood in stool) and am healthy for the most part (outside of stress) - so I dread this. I had two babies naturally and that was enough pain for a lifetime. I guess we do what we have to do.
Thanks...


100 cm^3 is cubic centimeters. The dimensions of my tumor are in my signature.

You're on a trial so what you're doing is different than what most of us have done. You would need opinions from people who have been through the trial.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Wed May 02, 2018 9:41 am

HI NH Mike.
I am not on a trial yet. Trying to decide between the standard protocol (FOLFOX - Oxaliplatin and 5FU and Leucovorin - for 4 months, then radiation) and possibly doing the trial (which, apparently, merely involves flipping the chemo and the radiation - but same stuff and same amount of time - just flipped).

And how do I get feedback from folks who may have tried this trial? I'd need to do that ASAP because my oncologist plans to call me imminently.

Thank you for the information!!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

User avatar
O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby O Stoma Mia » Thu May 03, 2018 12:11 am

lakeswim wrote:...
And how do I get feedback from folks who may have tried this trial? I'd need to do that ASAP because my oncologist plans to call me imminently.

Thank you for the information!!

You need to specify the trial number (and its name/title). Is this the trial by any chance? It looks like it's NCT02008656 coordinated by MSKCC, but with Cleveland Clinic as a collaborator.

A Phase II Study of Chemotherapy and Chemoradiation Followed by Surgery or Non-Operative Management in Patients with Stage II or III Rectal Cancer
https://www.mskcc.org/cancer-care/clinical-trials/13-213
https://clinicaltrials.gov/ct2/show/NCT02008656

If not, then which one is it? If this is the one, then be sure you read all of the details before you sign up.

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Thu May 03, 2018 2:51 pm

Yes - that's the trial. Thank you. How can I get feedback from people here on the board on this trial?

And, BTW, you were right! I asked today (and my consult with the radiation oncologist) about my actual TNM (because nobody had confirmed this for me) - and I am T4 - not T3. They are not actually sure if it's T3 or T4 but are going with 4 to make sure I am treated properly.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby juliej » Thu May 03, 2018 7:13 pm

Lakeswim, choosing to enter a clinical trial is an important personal decision. It's really up to you. No one will force you to join the trial. That said, I know one of the docs involved in this trial (Dr. Saltz) and he is an excellent doctor. MSK is also a superior cancer center so I'm sure you would receive excellent care there.

The trial is to determine if chemotherapy before chemo-radiation is more effective than the standard protocol, which is usually a neo-adjuvant course of chemo-radiation, followed by 4 months of adjuvant chemotherapy. Patients whose tumors disappear with either method won't have surgery and just be monitored. Patients whose tumors did not disappear with either method will go on to have surgery.

Both methods are good - there's nothing terribly experimental here. It's just a reversal of the standard order. If you have a complete clinical response (cCR) and so don't need the surgery, you'll be followed something like every 3 months for 2 years, and every 6 months thereafter until you reach 5 years.

If you have questions, ask the clinical trial docs. They should be able to allay any fears that you have. If you still feel uncertain, just say "no" and go the traditional route. You'll get good care at Cleveland or MSK either way. Research docs, like the ones you talked with about the trial, aren't the best at "social skills" (talking to patients) so I can understand why you felt like the conversation was rushed. Why don't you talk to them about it at Cleveland Clinic when you go for your second opinion?

Hope this helps!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Fri May 04, 2018 7:45 am

Hi Juliej.
I already had some misgivings about the trial - esp given the way they threw it in my lap (literally) while I was in the middle of my chemo clinic appt (which was already overwhelming enough) and are clearly trying to rush me through to a decision, but given the things that weissmom mentioned about vaginal stenosis, etc. and the other nasty side effects of radiation, I am no wondering if there are any reasons relating to these side effects alone to do it one way or the other. And I'm sure they don't have answers to it (it's probably not on their radar!).

That said, there was conversation yesterday about the trial and they said I'd get "extra attention" being on the trial and would be "monitored" better (esp if we do watch and wait) and they would be "followed more closely" (as clinicians), which all sounded like positive things to me. (Yet still like a sales job, TBH.) Anyway, thanks for your feedback. I will ask CC when I get there and see what they say.

This is all so bizarre. When do I wake up from this nightmare? (And when do I stop thinking that this may not be real?)

Thanks so much,
Susan
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby juliej » Fri May 04, 2018 5:49 pm

lakeswim wrote:Hi Juliej.
I already had some misgivings about the trial - esp given the way they threw it in my lap (literally) while I was in the middle of my chemo clinic appt (which was already overwhelming enough) and are clearly trying to rush me through to a decision, but given the things that weissmom mentioned about vaginal stenosis, etc. and the other nasty side effects of radiation, I am no wondering if there are any reasons relating to these side effects alone to do it one way or the other. And I'm sure they don't have answers to it (it's probably not on their radar!).

That said, there was conversation yesterday about the trial and they said I'd get "extra attention" being on the trial and would be "monitored" better (esp if we do watch and wait) and they would be "followed more closely" (as clinicians), which all sounded like positive things to me. (Yet still like a sales job, TBH.) Anyway, thanks for your feedback. I will ask CC when I get there and see what they say.

This is all so bizarre. When do I wake up from this nightmare? (And when do I stop thinking that this may not be real?)

Thanks so much,
Susan

Hi, Susan,

There was a trial awhile back at MSK that involved no radiation, just chemo for rectal cancer. You might check if CC has a current trial like that if you're worried about the radiation. Of course, much depends on your individual biology, but it's definitely worth mentioning.

By the way, I did not have radiation for my rectal cancer. I was already Stage 4 at diagnosis so they just put me on chemo and said "good luck." :shock: After having a strong response to chemo, I went to MSK for a second opinion. They said the chemo had eliminated some tumors and severely shrunken the rest. They arranged for me to have surgery to remove the rectal tumor and have a liver resection at the same time. I had an ileostomy for 3 months and then a reversal back to my "original plumbing." :D Since I didn't have radiation I haven't had the bowel issues that others have had. Radiation weakens the tissue and makes it more fragile. Thought I'd let you know my history in case it helps! The main thing is to keep asking questions until you understand all the risks involved with any treatment or clinical trial. It's your decision. Don't be afraid to gather all the facts and then decide.

And I hear you about feeling like you need to wake up from the nightmare! Getting a cancer diagnosis is such a shock to the system, both physically and mentally. It can take some time to process everything. It's all so overwhelming at first. But we're here for you - remember that. It feels absolutely horrible now, but just concentrate on getting through those initial doc visits, then you'll start your treatment, and then you can start a countdown to when it's all over. You can do this!!!

Hugs to you!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

User avatar
O Stoma Mia
Posts: 1709
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Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby O Stoma Mia » Sun May 06, 2018 9:33 am

juliej wrote:... The main thing is to keep asking questions until you understand all the risks involved with any treatment or clinical trial. It's your decision. Don't be afraid to gather all the facts and then decide...

Lakeswim -
Have you decided yet about participating in the clinical trial? What Juliej said is very important. You need to keep asking questions until you fully understand what would happen to you if you were to sign up for the trial. Since this is a clinical trial conducted in the U.S., it is covered by U.S. Federal law. The law in question is the law designed to protect human subjects who agree to participate in research clinical trials. The doctors are required to answer all of your questions. It's your right to ask these questions. You shouldn't be afraid to gather all the facts before deciding, because the law is on your side.This law is known as:

Code of Federal Regulations, Title 21, Section 50.25 - Elements of Informed Consent

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby lakeswim » Sun May 06, 2018 11:03 am

O Stoma Mia wrote:
juliej wrote:... The main thing is to keep asking questions until you understand all the risks involved with any treatment or clinical trial. It's your decision. Don't be afraid to gather all the facts and then decide...

Lakeswim -
Have you decided yet about participating in the clinical trial? What Juliej said is very important. You need to keep asking questions until you fully understand what would happen to you if you were to sign up for the trial. Since this is a clinical trial conducted in the U.S., it is covered by U.S. Federal law. The law in question is the law designed to protect human subjects who agree to participate in research clinical trials. The doctors are required to answer all of your questions. It's your right to ask these questions. You shouldn't be afraid to gather all the facts before deciding, because the law is on your side.This law is known as:

Code of Federal Regulations, Title 21, Section 50.25 - Elements of Informed Consent


HI, I have put off on deciding on the trial until I get this second opinion tomorrow at Cleveland. (They participate in this trial, too, so may have comments on whether I would be good candidate for it.) Based on the convo with the rad onc and the onc on Thursday, I felt more positive about it (because they said I'd get "special treatment" and " more monitoring" during and after treatment AND that they'd be held to higher standards given the clinical trial board needs to review/check everything AND because I may end up doing same thing we had planned to do - if I'm in one of the randomized groups) but then I read about the vaginal stenosis (and other radiation side effects) on here and now I am terrified of radiation and would rather do radiation SECOND (as is the plan without the trial). If I join the trial, I may be put in the randomized group that does the radiation first, and I guess I'd rather put off all the terrible side effects of radiation until I have to (though I am sure chemo is no picnic).

You seem to be very knowledgeable! Would you say radiation side effects are much worse than chemo - or does that highly depend? And must I even DO radiation?

I have to say, I am still struggling with the fact - as one commenter here put it - that my living will come at such a cost (to my quality of life) - esp given I feel so great now and I am young. But I guess these are things all of struggle with and have to work through.

Lastly, I RESENT that they have thrust this trial at me at the 11th hour and put a rush on my deciding - because thinking about the trial is now dominating my time (for research and contemplation) versus time spent considering general questions I should be asking - regardless of the trial. He even asked me to sign the papers (saying we could always tear them up if I change my mind) so we could get the process moving. Maybe that's how it goes and he's thinking of my best interests, but I still resent that this trial has become a focus for me right now. I feel like I'm getting less time to research my cancer treatment and cancer team than I would to buy a new car.

Thank you....
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: FINALLY Staged, Timing of 2nd opinion (with Clinical Trial option complicating matters)

Postby O Stoma Mia » Sun May 06, 2018 1:29 pm

lakeswim wrote:... Would you say radiation side effects are much worse than chemo - or does that highly depend? And must I even DO radiation? ...

I don't really know, but I think it probably depends. I noticed on the clinical trial's protocol that they will be using IMRT (Intensity Modulated Radiation Therapy) for the radiation phase. This procedure allows the radiation oncologist to target which parts of which organs receive the full intensity radiation, and which organs receive minimal radiation. Since your tumor is on the anterior wall of the rectum at the second haustral fold, this suggests that your radiation will be focused mainly in that area, which is very close to the uterus and not too far away from the upper part of the vagina (see diagram below). This may mean that there might be some collateral radiation damage to the female uro-genital area.

Diagram:
http://www.stepwards.com/wp-content/uploads/2016/06/Urogenital-system-female-anatomy-photographs-sacrum-ureter-rectum-uterus-posterior-fornix-vagina-rectouterine-pouch-levator-ani-muscle-cervix-anus-cl.jpg

Here is some information on IMRT and radiation:

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


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