Questions after Chemoradiation. I need advice.

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MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Questions after Chemoradiation. I need advice.

Postby MDK » Wed Mar 16, 2016 2:18 pm

I finished Chemoradiation on February 17th. I had a very tough time with the radiation part and am still suffering from the effects.

Yesterday, I visited my surgeon who examined me (he did not use ultrasound, offer CT or MRI - this was a manual exam, pain was horrid) and said the tumor is still there and does not seem to have shrunk much. The tumor is very close to the anal verge. He explained that APR is the best, safest way to go - because he knows of my desire NOT to have a colostomy, he also discussed a TME but would not be able to get a clear margin hence reoccurrence was a real possibility.

I asked him what if the tumor was dead - would that make a difference. NO.

I guess I am asking is this standard procedure. I am being treated at a well known cancer hospital in Columbus Ohio. This is a teaching hospital and I know that they will most probably suggest the gold standard and deviate little. Shouldn't some type of diagnostic test be performed to see what, if anything, the chemoradiation did. Shouldn't this have been offered? I just feel as if something is missing here. I feel there is a rush to APR surgery.

Thanks for the input. I appreciate the help. ALSO yesterday when my surgeon examined me I told him I had calmoseptine (did I spell that right) applied. He asked me did I like that? I told him it had been a life saver and that my radiologist had not suggested it - that I learned of its existence on this board. It is the only thing that healed me!!!
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Questions after Chemoradiation. I need advice.

Postby BrownBagger » Wed Mar 16, 2016 2:31 pm

It's always good to get a second opinion, but what your doctor is suggesting sounds like standard operating procedure (if you'll pardon the pun) to me. The whole point of chemo-rad is to shrink the tumor to get clear margins for surgery. In the absence of much of a result, they have to go with Plan B.

I know it's hard to accept, but the people I know who have permanent colostomies and ileostomies seem pretty happy with their decision, once they've had a chance to live with it for awhile and get used to the routine. It's a lot less work and grief than trying to deal with a compromised and uncooperative rectum. Dealing with cancer can be a real emotional roller coaster. Sometimes you're presented with options--none of which have any appeal. You make your choice and learn to live with it.

Good luck, whatever you decide. But considering what's at stake, I'd at least consider seeking a second op.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Questions after Chemoradiation. I need advice.

Postby Soccermom2boys » Wed Mar 16, 2016 5:11 pm

You and I have similar situations. I was diagnosed back in August with a large tumor in the distal rectum that was right up against the anal verge. I too had the exact same chemoradiation schedule, my Xeloda was 2600 mg per day I believe. At any rate, I was rather bummed to have gone through the physical pain of radiation to have my tumor shrink very slightly as well (and yeah, those digital exams do hurt, I can feel your pain on that, literally!). So because it did not have much change in size and was still too close to the anal verge to get clear margins that meant I needed a permanent colostomy with my APR surgery. Yes, this is not what anyone wants to hear or have happen, but hard to turn it down when the alternative is most likely you leave open a greater opportunity for the cancer to linger unknowingly. My surgeon knew I wasn't thrilled with the idea, but as he has done his fair share of surgeries he said that he has seen many patients who did not go the ostomy route and live a life with fecal incontinence issues and would have a better quality of life had they done the ostomy in the first place.

So tomorrow is actually three months since I had my APR surgery and I am getting used to my new lifestyle. Not going to lie, not always ideal, but not as horrible as I think you originally think it will be. On a good note, a colostomy versus an ileostomy offers the chance to "irrigate" and not have a pouch attached to you 24/7. I am going through adjuvant chemotherapy right now so not going to try irrigating for some time, if at all, just kind of taking it one day at a time to see how it goes.

Based on all that I have read, most especially on this forum, this really is the standard of care for rectal cancer so rest assured that even though you are at a teaching hospital you are getting the same care as at probably any other hospital. Wishing you the best, it definitely is a long and mentally and physically grueling process, but eventually one day turns in to another and you are through the surgery and recovering. As many have said on here, it is absolutely a day to day mindset that gets you through. After my surgery, every morning when I woke up and got up out of bed that was my daily yardstick for measuring progress--did I at least feel better than the day before? Time does march on as do we so eventually this will be in the rear view window.

Also, if you do go the colostomy route I would strongly suggest checking out the forum on UOAA (United Ostomy Assoc of America) website. Excellent resource of regular folks dealing with the day to day of having an ostomy. Will be thinking of you, good luck with your next leg of the process, better days are coming!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Questions after Chemoradiation. I need advice.

Postby MDK » Wed Mar 16, 2016 6:45 pm

Thank you BrownBagger and SoccerMom. SoccerMom, our situations sound so similar (I am also the Mom of two boys - the lights of my life). Although I am very discouraged with this outcome my main objective is to save my life for my family. At least I don't feel so alone. Thank you.

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Questions after Chemoradiation. I need advice.

Postby Soccermom2boys » Wed Mar 16, 2016 8:39 pm

The absolute beauty of this forum, in my opinion anyway, is to realize we are not alone. It's tough when the people around us aren't going through all that we are (and thankfully so for their sake). To have this forum--to hear people have the same fears and emotions and pains we do goes a long way mentally for sure. I don't post often (your situation was so similar to mine I wanted to make sure I reached out to hopefully put you at ease at least a little), but I read daily and learn so much and feel better about my struggles.

I realized I didn't address your question regarding getting some diagnostic test post radiation but before surgery. I too kind of wanted to have some type of scan just because I went through the, at times grueling, process of radiation, hoping for some validation it was all for not. However, my surgeon and onc don't feel getting a scan at that point is worth it because at the end of the day I was getting surgery regardless, they knew enough just from digital exam that tumor was still present and needed to go and based on size and location it was definitely going to be via APR. So in my case, I have not had any scans since my preliminary ones once it was determined my tumor was cancerous, back in August. I just had an appointment today with onc and inquired about when I do have my next scan and she said it will be a CAT scan after I complete my final (8th) round of Folfox.

As I said, I read here daily so I will keep en eye out for you, hoping all goes as well as possible. It's hard when you are at the point where the surgery is ahead of you and you can't wrap your brain around how it will go and how you will feel, but our human instinct of survival kicks in and it is amazing what we can deal with physically and mentally. And just like you, my boys are my motivator to kick cancer and have many many years to be with them and watch them grow older. My husband is a keeper as well, don't know where I would be without him for sure!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox


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