Recent diagnosis

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Recent diagnosis

Postby kellywin » Mon Feb 29, 2016 5:05 pm

I don't know if I'm going to be any help here as this has to be a decision that you are comfortable with, but I'll throw in my 2 cents, for whatever it's worth.

2 Surgeries vs. 1 - I don't think you're going to have much choice, that's totally up to the surgeon, either they'll decide where the tumor is located, how much they have to remove and if the tissue is ok and don't have to give you an temporary ileostomy or they won't. I didn't have to have one.

Radiation - I think I tolerated radiation (along with chemo Xeloda only) fairly well during treatment. It sucks, but for me was tolerable. Yes, I have damage from radiation, my gluts are totally shot, but if it's part of what got me here now, I'll take it.

Chemo - there's no way in hell I could have tolerated 12 rounds with Oxi. I was supposed to do 6 rounds of Xelox (similar to Folfox, but without the 5FU pump, Xeloda pills plus the Oxaliplatin). If you do radiation, you don't have to have as much Oxaliplatin as they "count" the prior chemo with radiation. I felt like general shit most of the time. And with Folfox, typically you have to go every other week, vs. the once every 3 weeks on Xelox. Also, if you are only having a few rounds of Xelox, you can forgo the port. Either way, sitting there while they drip poison you is really hard mentally.

I'm no fan of radiation, forced menopause & leather gluts. but I'm also no fan of the neuropothy in my feet that that got worse after chemo ended, the slight chemo brain I have (either not being able to find the right word or mispronoucing a word that I know how to say). Each phase of this crapfest sucks, but looking back, I don't know if I'd want to double my chemo and skip the radiation. It'd have to be some serious proof that this method was better.

Good luck with whatever you decide.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

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

Re: Recent diagnosis

Postby Lydia666 » Mon Feb 29, 2016 8:49 pm

kellywin wrote:I don't know if I'm going to be any help here as this has to be a decision that you are comfortable with, but I'll throw in my 2 cents, for whatever it's worth.

2 Surgeries vs. 1 - I don't think you're going to have much choice, that's totally up to the surgeon, either they'll decide where the tumor is located, how much they have to remove and if the tissue is ok and don't have to give you an temporary ileostomy or they won't. I didn't have to have one.

Radiation - I think I tolerated radiation (along with chemo Xeloda only) fairly well during treatment. It sucks, but for me was tolerable. Yes, I have damage from radiation, my gluts are totally shot, but if it's part of what got me here now, I'll take it.

Chemo - there's no way in hell I could have tolerated 12 rounds with Oxi. I was supposed to do 6 rounds of Xelox (similar to Folfox, but without the 5FU pump, Xeloda pills plus the Oxaliplatin). If you do radiation, you don't have to have as much Oxaliplatin as they "count" the prior chemo with radiation. I felt like general shit most of the time. And with Folfox, typically you have to go every other week, vs. the once every 3 weeks on Xelox. Also, if you are only having a few rounds of Xelox, you can forgo the port. Either way, sitting there while they drip poison you is really hard mentally.

I'm no fan of radiation, forced menopause & leather gluts. but I'm also no fan of the neuropothy in my feet that that got worse after chemo ended, the slight chemo brain I have (either not being able to find the right word or mispronoucing a word that I know how to say). Each phase of this crapfest sucks, but looking back, I don't know if I'd want to double my chemo and skip the radiation. It'd have to be some serious proof that this method was better.

Good luck with whatever you decide.

Totally agree!
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.

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

Re: Recent diagnosis

Postby rp1954 » Tue Mar 01, 2016 12:43 pm

babycatcher wrote:
... 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?


Yes, but the caveat is those blood tests, both predictively for initial targeting of tx, and for monitoring to actually check for efficacy.
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

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Recent diagnosis

Postby Basil » Sun Oct 22, 2017 7:59 pm

I am bumping this because I'm a PROSPECT trial patient newly in surveillance stage. Had a great result - path complete response to six rounds of FOLFOX.

Despite the response - docs knew tumor was gone or all but gone prior to LAR - they removed 90% of my rectum and 42 lymph nodes. My understanding was the size of the surgical specimen was largely or wholly determined by the size and penetration of the tumor pre-treatment, i.e., even if the tumor shrunk to little or nothing they're still going to remove its former footprint, so to speak. I was uncertain and neglected to ask why they removed 42 LN, which seems to be a lot more than other folks. My tumor was medium sized and I thought the number of nodes was high.

I'm doing well and have no complaints but am now wondering if whether the surgeon was being cautious and removed more because I didn't have radiation to kill the nodal field.

I've made a note to ask him but I'm not scheduled to see him for a year (fingers crossed). If anyone has knowledge or a hypothesis I'd be interested in hearing it. Thanks.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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

Re: Recent diagnosis

Postby O Stoma Mia » Sun Oct 22, 2017 10:00 pm

Basil wrote:... I'm doing well and have no complaints but am now wondering if whether the surgeon was being cautious and removed more because I didn't have radiation to kill the nodal field.... If anyone has knowledge or a hypothesis I'd be interested in hearing it. Thanks.

I don't have any specific knowledge, but I do have a hypothesis: When they remove a rectal tumor, they try to follow the standards for what is called a Total Mesorectal Excision (TME). This is a type of surgery where they cut out the whole mesorectum all the way from the lower cut to the upper cut. The mesorectal envelope consists of the rectum itself plus all of the structures that are contained in the layer of fat surrounding the rectum and encased by the mesorectal lining. This includes all of the lymph node ganglia that happen to be located there. After surgery, they send the entire unitary specimen to the pathologist and he/she then searches through all of the fat layers to find whatever lymph nodes might be there. If the upper cut was high in the rectum and the lower cut was very low in the rectum then there might be quite a large number of lymph nodes harvested. That's my (unconfirmed) hypothesis.
.
https://www.slideshare.net/mobile/ensteve/the-surgery-for-rectal-cancer-presentation


.Image

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Recent diagnosis

Postby CRguy » Sun Oct 22, 2017 10:36 pm

OSM brings some good dialogue to this topic. ( as usual ! :mrgreen: AS ALWAYS !!!!! )

To clarify :
LAR = low anterior resection = HOW the surgeon gets to the surgery site
TME = Total Mesorectal Excision = HOW the actual surgery is done once they are into the LAR access

YES I have had this EXACT surgery
and YES I actually AM a surgeon ( Vet for 36 years )

The TME is designed, as noted above, to remove en bloc, the entire mass of rectosigmoid/fat mass/mesorectal adnexa/ancilliary structures ...
TO remove everything which could be associated with harboring local neoplastic tissue AND any conduit from that surgical site which could allow metatsatic spread. It also allowed for preservation of essential nerves, thereby limiting post operative complications such as ED !

Local recurrence with a rectal primary is considered a higher risk ... SO the TME was implemented to try to reduce the complications and recurrence levels.

If anyone wants the original papers detailing this procedure I will try to dig them up ...BUTT
suffice it to say : I had a low rectosigmoid primary, had the TME ( and all kinds of radiation and chemo before and after etc. )
and I am still here to bug y'all today 10+ years later

Yes I would do it again if I had it to do over !

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Recent diagnosis

Postby Basil » Mon Oct 23, 2017 11:14 am

Thanks! I appreciate the information.

My surgeon told me when I was first dx that if he did surgery only there was a 90% chance of no local recurrence and a 50% chance of a systemic recurrence. Sound about right?

If so, does a path complete response prior to surgery help with the local recurrence risk?
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

User avatar
chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Recent diagnosis

Postby chemo sabe » Mon Oct 23, 2017 7:09 pm

babycatcher - my advice is to not be your own doctor. Radiation is a great way to kill cancer cells. It also kills other tissues but is used in the treatment of rectal cancer because there is very little else to harm down there. The cool thing is that you are allowed to ignore conventional wisdom and choose your own way. Ask Steve Jobs how that worked out - oh - that's right, you can't ask Mr. Jobs, cancer killed him. This disease can take your life. Do you want to maximize your chances of living ??
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 119 guests