Doc hated second opinions & some more questions about treatment

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crybaby
Posts: 17
Joined: Sat Jun 11, 2022 4:20 am

Doc hated second opinions & some more questions about treatment

Postby crybaby » Sat Jul 30, 2022 11:12 am

Complete timeline of my dad's treatment

03/30/17 - Colonoscopy revealed circumferential polypoidal rectal growth starting 8 cm from anal verge upto 15cm.
04/05/2017 - CEA 5.16
04/10/17 - Underwent LAR + TME with brooke ileostomy
slow recovery, developed fistula leak.
09/17 - Finished FOLFOX-4
10/17 - Clear PET
11/17 - Went for ileostomy reversal. week later developed another leakage. had to redone the surgery.
12/18 - PET scan revealed 2 deposit largest measuring 1.2 x 1 cm
03/22 - PET scan revealed
i) soft tissue lesion in sacrum S1 (SUVmax 9.7)
ii) pelvic deposit increasd to 2.3 x 3.1 cm (SUVmax 7.78)
Pre Treatment CEA - 4.83
04/06/22 - Radiation to both sites (45Gy in 25 fractions)
05/11/22 - Completed the radiation treatment
Post Treatment CEA - 1.98
06/26/22 - PET Scan showed increased SUV to both sites
i) sacral lesion now had (SUVmax 9.99)
ii) pelvic deposit had 10% increase in size (SUVmax 8.54 size - 4.6 x 4.3 cm)
07/30/22 - Abdomen ultrasound revealed 3 gallbladder calculi (largest measuring 13mm) and 1 kidney stone of 3-4mm

Actually my dad had a guava this week which don't really suite his diet and eventually his bowel movements were effected and he got some abdomen pain too. So he consulted his current onco MD about it. He suggested ultrasound and medicine. Though pain and bowel movements are much better now. But my dad asked the doc that the local oncologist is suggesting chemotherapy and somehow this really annoyed him. And he have told us that we should just have treatment from local onco from now on. So its time to change the hospital i guess. I kinda expected more honestly speaking, considering how we faced complications in all of our surgeries. It was kinda all over text so was easy to process but would have been terrible if he did that in person. :(

Also during radiation in 2022, he assured my dad that the recurrence from both sites will be gone by end of radiation. On PET/CT Post 1 month, recurrences had slightly increased SUV but overall stable. I really hope that this is just inflammation and he we do get rid of this disease in upcoming scan in September 2022.

I also want to know something about bowel movements because ever since surgeries, the bowel movement of my dad never went back to normal. Surgeon always blamed the decrease of bowel loop's length. And my dad adapted to this new normal but now I am wondering could this have been all because of that pelvic recurrence.

My another question is about PET scan, I have realized that it should be done after atleast 3 months post treatment. But can any of you who did that early tell me how was your report. Because my dad's early PET scan did reveal increased SUV. Can that really be because of inflammation. I have started to panic again :(

Also can anyone tell me about effectiveness of radiation on sacrum because I have read many read many success posts but the current PET scan showed 10% more increase in size after radiation.

I also apologize for dumping all this upon you guys. But it is also true that I am not really close with anyone irl. I just hope everything works out well.
I also want to wish you all luck on this journey.

Rock_Robster
Posts: 694
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Doc hated second opinions & some more questions about treatment

Postby Rock_Robster » Sat Jul 30, 2022 7:53 pm

Sorry to hear - this has indeed been a tough run.

On your question specifically, I had a PET 2 months after radiation and my med onc said it was “just” late enough to be able to draw some meaningful conclusions, but there l was also still quite a lot of ‘noise’ there (ie inflammation, scarring / post-treatment changes). We’re re-doing the PET in another 2 months to hope to get a clearer picture of things.

I think my rad onc described the idea of a 1 month PET as likely to be a “hot mess”.

Good luck,
Rob
40M Australia
2018 Dx RC, 12cm high
G2, EMVI, LVI. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then <2. Jun-22: 5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic IMRT radiation
7/19 ULAR & ileo (reversed)
8/19 Liver lesion
8/19 FOLFOX, FOLFOXIRI, FOLFIRI x7
12/19 Liver resection
NED
11/21 Liver met & celiac node; 2-3 tiny lung things
12/21 PVE
3/22 Nodal spread & 3 liver mets. Lymphadenectomy
4/22 Liver SBRT
6/22 Liver looks good. Still some small lung things

User avatar
cptmac
Posts: 1204
Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

Re: Doc hated second opinions & some more questions about treatment

Postby cptmac » Sat Aug 06, 2022 9:30 am

I always recommend second opinions. When I was diagnosed in 2004, a lot of doctors gave me no hope.

You don't state where you live, but if you have Stage IV, I totally recommend you go to one of the very top hospitals.

If you live in the US, these are MD Anderson, Mayo, Memorial Sloan Kettering.

I went to the University of Minnesota, it was the right place for me.

You can find the top hospitals here.

https://health.usnews.com/best-hospital ... ngs/cancer
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

crybaby
Posts: 17
Joined: Sat Jun 11, 2022 4:20 am

Re: Doc hated second opinions & some more questions about treatment

Postby crybaby » Tue Aug 09, 2022 9:50 am

cptmac wrote:I always recommend second opinions. When I was diagnosed in 2004, a lot of doctors gave me no hope.

You don't state where you live, but if you have Stage IV, I totally recommend you go to one of the very top hospitals.

If you live in the US, these are MD Anderson, Mayo, Memorial Sloan Kettering.

I went to the University of Minnesota, it was the right place for me.

You can find the top hospitals here.

https://health.usnews.com/best-hospital ... ngs/cancer

I am not in US and my dad was getting treatment in one of the bigger cancer centers of the country. But that hospital never kinda suited us, had many complications post surgery. And the main MD was so full of himself there. He never bothered to give full briefings on the treatment procedure. In coming weeks, we plan to visit new cancer center.
I hope things start getting from now on.


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