New Member, Introducing Myself

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Basil
Posts: 197
Joined: Thu Mar 16, 2017 12:33 pm

Re: New Member, Introducing Myself

Postby Basil » Wed Aug 09, 2017 9:20 pm

JJH wrote:
Basil wrote:P.S. I've had a temp bag for exactly one week and am already harassing my surgeon for a reversal. I haaaattteee this fucking thing.

tammylayne wrote:...Your doc put the bag in...he/she is the best one to discuss when and how to take the bag out....


There is only one real complaint I have about my treatment and it concerns the bag. I have a lot of confidence in my surgeon and the only directive I gave him was pre-resection: I want you to do what you have to do but if there is any gray area do not give be a temp bag.

He seemed to understand this. I had no radiation and was a prime candidate to skip the ileostomy. But only time would tell. Woke up with the bag. When the surgeon came in I was told it was a close call and "she" was the tie breaker. "She" turned out to be a fellow (young doc) who I had never met before that day. "She" was not my doctor and someone I never (and would not have) authorized making medical decisions. If I had to do it again, I would have been explicit that I did not consent to any newbs having anything to do with my care.

If my surgeon had said, "it was a close call but this is what's best for you," I would have accepted it. But what I heard was the surgeon would not have done it but they let the green doctor decide.

Sorry, still bitter, although I know I should count my blessings and shake it off.
40 y/o male, kids 6&9
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

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

O/T Reply to Basil's question

Postby JJH » Wed Aug 09, 2017 11:47 pm

Basil wrote:Question about scans - I had a ct and MRI in March at diagnosis and a Ct and MRI before surgery a couple of weeks ago... Any strong thoughts on the benefit of a PET at this point?

According to the article cited by peanut_8 in this thread, it may be too soon after surgery to consider a PET/CT at this time. There is a whole section in that article about possible false positive and false negative reports in PET scans done too close to recent surgeries.

I have had 3 PET/CT scans in the past and one of them generated a False Positive due to reasons cited in that article.
Last edited by JJH on Thu Aug 10, 2017 12:25 am, edited 1 time in total.
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

O/T Reply to Basil's remark

Postby JJH » Thu Aug 10, 2017 12:23 am

Basil wrote:There is only one real complaint I have about my treatment and it concerns the bag. I have a lot of confidence in my surgeon and the only directive I gave him was pre-resection: I want you to do what you have to do but if there is any gray area do not give be a temp bag.

He seemed to understand this. I had no radiation and was a prime candidate to skip the ileostomy. But only time would tell. Woke up with the bag. When the surgeon came in I was told it was a close call and "she" was the tie breaker. "She" turned out to be a fellow (young doc) who I had never met before that day. "She" was not my doctor and someone I never (and would not have) authorized making medical decisions. If I had to do it again, I would have been explicit that I did not consent to any newbs having anything to do with my care.

If my surgeon had said, "it was a close call but this is what's best for you," I would have accepted it. But what I heard was the surgeon would not have done it but they let the green doctor decide.

Sorry, still bitter, although I know I should count my blessings and shake it off.

I have a couple of questions. Do you have a copy of the consent form that you signed before your surgery? If so, did it mention anything about other doctors possibly participating in your surgery? Do you know who actually performed your ileostomy procedure?

For some teaching hospitals that are connected with medical schools, there is a paragraph like that in the required Informed Consent Form.

You can view such a consent form by doing a Google search for a document entitled, . GENERAL_SURGERY_07.PDF. On the second page of that document there is a paragraph explaining this possibility. That document Is a consent form for laparoscopic surgery, which is somewhat similar to your robotic surgery.

Also you may want to have a look at this document:

https://www.mdanderson.org/education-training/clinical-research-training/graduate-medical-education/residencies-fellowships/surgical-oncology.html
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

JennPixie
Posts: 16
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: New Member, Introducing Myself

Postby JennPixie » Fri Aug 11, 2017 12:34 pm

Soooo I've just got back from my follow up visit.
There are a couple of lymph nodes that have them wanting a better lookie. (a bit enlarged. We'd like to know why. *Yeah? So would I!*)
They're gonna sched me for a PET, and we'll see from there.

*sigh*
So it goes... :|
A work in progress...
...Aren't we all.?.
8)

mpbser
Posts: 282
Joined: Wed Apr 19, 2017 11:52 am

Re: New Member, Introducing Myself

Postby mpbser » Fri Aug 11, 2017 2:11 pm

I was hoping that the hot spots that showed up on my husband's PET scan were false positives. It really sucked to find out he had another large polyp/tumor on the other side of his colon, and that the PET scan was "correct." Of course, it's better to know than to not know... so, good luck and here's to hoping that no hot spots are detected!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

Basil
Posts: 197
Joined: Thu Mar 16, 2017 12:33 pm

Re: O/T Reply to Basil's remark

Postby Basil » Fri Aug 11, 2017 6:06 pm

JJH wrote:
Basil wrote:There is only one real complaint I have about my treatment and it concerns the bag. I have a lot of confidence in my surgeon and the only directive I gave him was pre-resection: I want you to do what you have to do but if there is any gray area do not give be a temp bag.

He seemed to understand this. I had no radiation and was a prime candidate to skip the ileostomy. But only time would tell. Woke up with the bag. When the surgeon came in I was told it was a close call and "she" was the tie breaker. "She" turned out to be a fellow (young doc) who I had never met before that day. "She" was not my doctor and someone I never (and would not have) authorized making medical decisions. If I had to do it again, I would have been explicit that I did not consent to any newbs having anything to do with my care.

If my surgeon had said, "it was a close call but this is what's best for you," I would have accepted it. But what I heard was the surgeon would not have done it but they let the green doctor decide.

Sorry, still bitter, although I know I should count my blessings and shake it off.

I have a couple of questions. Do you have a copy of the consent form that you signed before your surgery? If so, did it mention anything about other doctors possibly participating in your surgery? Do you know who actually performed your ileostomy procedure?

For some teaching hospitals that are connected with medical schools, there is a paragraph like that in the required Informed Consent Form.

You can view such a consent form by doing a Google search for a document entitled, . GENERAL_SURGERY_07.PDF. On the second page of that document there is a paragraph explaining this possibility. That document Is a consent form for laparoscopic surgery, which is somewhat similar to your robotic surgery.

Also you may want to have a look at this document:

https://www.mdanderson.org/education-training/clinical-research-training/graduate-medical-education/residencies-fellowships/surgical-oncology.html


Thanks - I have no doubt that I signed a consent agreement that allows fellows to perform procedures. I have been relatively open to that stuff. I had a freaking gallery of nurses and trial staff in the room for my first flex sig when I agreed they could take extra samples for research. I just really didn't want a temp bag and erring on the side of not having one was the only directive I gave my surgeon. Anyway, I'm dealing with it and it's fine. Have my reversal scheduled for late September so there's a plan in place. My treatment has been surprisingly effective and I'm thankful for that. I know this is a minor, minor issue in the big picture and I'm not going to further whine about it.
40 y/o male, kids 6&9
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


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