Choosing not to do Adjuvent Radiation- Advice Appreciated!

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NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby NWgirl » Thu Oct 10, 2013 12:56 pm

Did you mean another large polyp? Tumor? Write more when you've recovered a bit from this. Sending strong thoughts your way. I'm so glad you got the scope and they can proceed to treat whatever this is - with whatever is required. Good for you for paying attention to your symptoms and getting immediate attention.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby PainInTheAss » Thu Oct 10, 2013 4:33 pm

StupidAssCancer wrote:I just got out of colonoscopy. They found a new large not file at same site as surgery. :(
Seriously?! Biopsy sent to pathology. Brain sent to looney bin! I'm freaking out.


What did they find? "new large not file"...? I'm assuming a new tumor?

I am also female and did pre-surgery chemoradiation. To say that radiation only prevents local recurrence isn't really accurrate in my opinion. Local cancer cells, even one cell, can spread to other parts of the body through the blood or lymph system. Why even risk leaving behind one cell if there is something you can do about it? (most Colon cancer patients don't have the option of radiation, but rectal cancer patients do)

I was told by my onc that they are finding that that there is a direct link between response to chemoradiation and survival rates. I researched this and found this to be true. With rectal cancer, a complete response to radiation raises the survival stats to 90 percent regardless of initial staging. I am 3c and was initially told I had a 50 percent chance of recurrence with that stage. I would face any pain or discomfort to have a chance to raise that to 90 percent chance of no recurrence or even a cure! (I still don't know my pathology, I think I will find out next week at my doctor's appt.... but he said it looked like the tumor was dead with mostly just scar tissue left behind... biopsy of tumor site before surgery showed "some abnormal cells" so I'm not sure what counts as "complete response" now if my lymph nodes are clear... ugh!).

I also had problems with enemas... the tumor site blocked it somehow and I could only get about a third of the bottle in.

If you have a new tumor, I'm not sure why there is so much bleeding. I had bleeding before chemoradiation and it stopped about two weeks in. Very odd that your bleeding started at that point unless there is a new tumor further up the colon away from the radiation zone.

I understand your reasons for wanting to stop radiation right now with all this bleeding, but if you can still do it later, I would if I were you! A risk of local recurrence is also a risk of distance recurrence. You don't know where cancer cells will go if they are still in your body. That's the way I see it.

Keep us posted on your progress!

(used to be PainInTheAss... Now should be "Has no Ass"... haha)
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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StupidAssCancer
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Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby StupidAssCancer » Sun Oct 13, 2013 10:52 am

Yes, so sorry. Auto correct on phone- geez!
Yes they found a new nodule at previous surgery site. Thus the reason for not being able to get a enema to work, the nodule was blocking it.
I see surgeon tumor. I can't find any info on a reoccurance happening so soon so I'm praying that this new growth is in result to the 7 days I did of radiation or a late reaction to my surgery. I hate the weekends! The dr had the results on his desk bu because its the weekend I get to be scared to death until tomorrow not knowing what this is!
The GI dr did say as soon as he went in and saw it, "well here is the reason for your bleeding!" I was like duh... I knew something was very wrong!
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby StupidAssCancer » Tue Oct 15, 2013 2:04 pm

Update: i received my pathology reports back yesterday and the mass found at surgery rectal site turns out to be scar tissue caused from radiation as well as the original surgery. They removed the scar tissue and are asking I continue my radiation treatments. So thankful it wasn't a reoccurring cancer, breathing again. Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby NWgirl » Tue Oct 15, 2013 4:35 pm

Wow! The roller coaster continues. Are you going to continue w/the radiation? It's a tough course, I know. Hang in there.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

User avatar
StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby StupidAssCancer » Thu Oct 17, 2013 11:13 pm

I had my second opinion and decided today that Yes, I'm going to continue with Radiation. I'm starting on Tuesday. They found two nodes in my left neck that lit up with my PET scan so those are coming out to be biopsied on Monday. Has anyone heard of a malignancy to the neck missing liver lung etc? My drs seem to be baffled by this!
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Choosing not to do Adjuvent Radiation- Advice Appreciate

Postby teachpdx » Fri Oct 18, 2013 10:34 am

Alys, I'm sorry you're going through such a difficult time. I will keep you in my prayers and hope they can give you some relief from the bleeding. :? Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!


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