PET Scan Results - More Cancer???

Please feel free to read, share your thoughts, your stories and connect with others!
mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Mon Jul 17, 2017 9:30 am

Yes, he started taking cimetidine 800 mg daily about a week before his first hemi colectomy (May 19) and has been on it ever since.
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

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Wed Jul 19, 2017 6:20 am

Fun times

I am writing this letter regarding my husband, M----, as a follow-up to a telephone conversation I had with [hospital advocate] yesterday. In that phone call, I expressed concerns about a few issues. I describe them herein for your review.

First, someone at the Cancer Center scheduled M------ for “chemo” every two weeks well before he had his very first appointment with you. This was prior to any consultation about M------ about whether he was actually going to do “chemo” and/or the type of “chemo” he was going to choose. Around the same time, someone called him to tell him that a surgery for his port was scheduled for July 14th, again prior to and without any discussion with M------.

At subsequent consultations with you, M------ clearly expressed a preference for Capecitabine and was very hesitant about a port for Oxalplatin. When we met at his most recent appointment with you on June 22nd, we explained that M------ would be going to Dana Farber and Massachusetts General Hospital on July 6th for consultations. That was the last discussion we had and absolutely no final decisions had been made (obviously, because he had not even seen the Boston doctors yet at that point).

Here is a summary of what was discussed on July 6th:

Dana Farber (Dr. Cleary, Onc.; Dr. Wang, Surgeon)

1.) Adding Oxi- to Xeloda or 5-FU supposedly doubles efficacy.
2.) Doctors suspect that the large adenoma in transverse colon (mass #2 found June 28) that came back with no cancer in biopsy (took 1 cm in aggregate) is actually malignant.
3.) Based on #2, doctors want husband's entire colon removed.
4.) Doctors looked at the scans and are certain that there is indeed a small cancerous spot on the right lobe of the liver.
5.) Doctors say husband needs liver resection. Without citing hard data but appearing very confident, the doctors said that surgery is the way to go and strongly recommended it over RFA. This is based on "certainty of getting it all" thinking, to paraphrase.
6.) However, before any treatment begins, Onc wants husband to a) have a third/repeat colonoscopy to do another biopsy on the giant polyp/suspected tumor and b) have further genetic testing done both on his specimens and by blood draw.
7.) IF the polyp is removable during this colonoscopy, they will do so. We encouraged them to go this route, or at least try, because husband is loathe to lose any more of his colon.
8.) Onc says that genetics could influence a) the type of surgery done and b) whether or not he will recommend adding Panitumumab to the Xelox or Folfox. (I wasn't sure if he was referring to his MSS status or something else. Our local doctors did not send over all the records. I didn't get a chance to ask because Onc seemed in rush to finish up the appointment.)
9.) We asked about what our local doctor might have meant by Oxi- being hard on the veins. Apparently, if given through IV infusions, burns on the arms can develop, sometimes so much so as to require plastic surgery. (This was tough news for husband who really, really, really wants to avoid a port. He has since come to accept that a port is necessary.)
10.) Onc recommends doing six cycles of chemo, then have liver and/or colon resections, and then do 6 more cycles of chemo.
11.) Onc says husband needs to start chemo ASAP.

Mass General Dr. Zhu, Onc.

1.) Adding Oxi- to Xeloda or 5-FU is the way to go for Stage IV CC, even with husband's comorbidities. He said there is plenty of data to support this and I believe him.
2.) Zhu agrees that further genetic testing and a repeat colonoscopy/biopsy is needed.
3.) Zhu says that the liver mass(es) can be "easily addressed" with RFA or other ablative techniques. This was confirmed with the liver surgeon, Dr. Qudan.
4.) The radiology department is going to review the scans again per his instruction.
5.) Even though this is "difficult case", he is very positive and optimistic about husband's chances of beating this and moving on with his life.
6.) Zhu will be sharing the case with his team today and giving it extra attention.
7.) He does not think that husband necessarily needs chemo ASAP. His treatment recommendation is to take care of the resection(s) first and then start chemo.
8.) #7 seems to make sense because the logic is that the chemo will affect the liver in ways that there is more guesswork.

On July 13th, someone from the Cancer Center called M------ to remind him of his July 14th appointment. For what procedure this was to be, we are not certain, but on July 13th, he was undergoing his 3rd colonoscopy for the additional complex polyp/tumor at Brigham & Women’s Hospital that day (the 13th) and had no plans to have any procedure at SVMC on the 14th.

On July 18th, Allen (or Ellen?) at the Cancer Center called M------ to tell him he had chemo that day (the 18th). M------ has yet to have a Cancer Center appointment that involves a discussion of his availability. In fact, I expressed what his availability was in a previous fax for one of his appointments and that was ignored. M------ explained to Allen what the next steps are for the immediate future: genetic testing at Dana Farber on July 20th, colon surgery, then chemotherapy. What he described was his treatment decision based on Dr. Zhu’s recommendation of surgery first, then chemo.

Speaking of chemo, I noticed that his appointments had been scheduled for every other week. However, the NCCN 2017 Guidelines state:

CAPEOX
Oxalplatin 130 mg/m2 IV day 1
Capecitabine 1000+- mg/m2 twice daily PO for 14 days (NB: lower dosage may be necessary due to toxicity)
Repeat every 3 weeks

Also, at our June 22nd appointment, you had said that the Oxiplatin infusion would be every two weeks. This does not seem to comport with the NCCN.

M------ has essentially not been properly consulted by the Cancer Center regarding his treatment plans or his schedule. This is a synopsis:

1. July 20th : genetic testing
2. End of July/early August: colon and liver surgery
3. At some point post-surgery: port installation
4. After healing: begin chemo (CAPEOX, perhaps with an add-on based on genetic testing results)

Lastly, Dr. Aihara, the endoscopist at Brigham and Women’s, noticed that the site of M------’s anastomosis was inflamed, indicating that he was not healed at the eight (8) week point after his May 19th hemi-colectomy. Dr. Aihara informed us that healing can take 3-4 months. This causes a concern for timing the start of chemotherapy.

While [hospital advocate] offered us the opportunity to have an appointment with you to discuss, M------ does not have the time for that. This letter hopefully puts things on track.
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

cbsmith
Posts: 32
Joined: Sat Nov 28, 2015 11:45 am

Re: PET Scan Results - More Cancer???

Postby cbsmith » Wed Jul 19, 2017 8:14 am

The two week cycle was likely going to be for Folfox as that would be the standard treatment and the standard cycle.

With Capox, Xeloda, etc I believe the pill cycle is 3 weeks but the Oxi IV is still a 2 week cycle.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Wed Jul 19, 2017 11:47 am

Yes, cbsmith, but given the fact that my husband never, ever, ever, ever expressed any interest in doing folfox, why on earth was he scheduled for it?

Maybe the NCCN guidelines are not clear but I copied exactly what the guidelines say and it doesn't look like bi-weekly Ox- to me.

In any case, I really, really, really, really dislike his local oncologist or at least the Cancer Center. It seems like the left hand has no idea what the right hand is doing.
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

cbsmith
Posts: 32
Joined: Sat Nov 28, 2015 11:45 am

Re: PET Scan Results - More Cancer???

Postby cbsmith » Wed Jul 19, 2017 12:27 pm

For the scheduling, I am not sure if that is out of the ordinary. I'm in Canada so we have a lot of differences to the US so this may not apply there.

When I started my cancer journey I had my surgery and when the pathology came back as Stage 3 my surgeon made the referral to the oncologist. When I got my appointment with the oncologist she went over all of the information with us, options, etc and at the end made her recommendation that we strongly consider Folfox. At the end of the first meeting, this was three weeks after surgery, she said we have already set up appointments for a PICC line on xxx date and your first treatment on yyy date, which was 6 weeks after surgery.

She did tell us that we obviously had the choice not to do chemo and we also had a second appointment with her prior to the first treatment, but it was all set up before we even got to the first appointment. From what I understand this may be a standard thing done, at least in my province.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

User avatar
LeonW
Posts: 305
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: PET Scan Results - More Cancer???

Postby LeonW » Wed Jul 19, 2017 1:53 pm

Very interesting to discuss this as a legal dispute, but did you ask the onc?
Dec 2012 - Dx CC; MM @ 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, mets shrink from #3
Sept - nuclear liver scan, 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) all cancer gone, pCR
2014/15 - recovery; benign polyp Apr '15
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, May2017, next Nov 2017

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Wed Jul 19, 2017 2:49 pm

Hi Leon,

What legal dispute? I'm not sure what you mean. We were referred to the hospital advocate by his oncologist about a month ago to address any of our concerns.

Husband has not had a chance to meet with the local onc, as described herein. The notes from our last visit with her said that she was going to follow up with husband after he went to "Dana Farber," we had told her at that last visit that we had appointments in Boston scheduled for July 6th, but there was no "follow up." My husband describes it as if she "checked out as soon as she learned we were going for 2nd opinions."
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

User avatar
LPL
Posts: 282
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: PET Scan Results - More Cancer???

Postby LPL » Wed Jul 19, 2017 5:46 pm

mpbser wrote:I really, really, really, really dislike his local oncologist or at least the Cancer Center. It seems like the left hand has no idea what the right hand is doing.

If this is also your husband's feeling about your local Onc/Cancer Center - then to me this does not sound good for the future ..

Let me quote MissMolly, she wrote (here): "I think you will find that your husband will do best with an oncologist where the relationship seems to "click" at an intuitive level, where there is a congruence of interpersonal "fit."

I hope your DH will soon feel that "fit" - it is a lot going on for him now.

All the best /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

lpas
Posts: 973
Joined: Wed Nov 19, 2014 11:11 pm

Re: PET Scan Results - More Cancer???

Postby lpas » Wed Jul 19, 2017 6:10 pm

Christine,

I know you have concerns about the healing process from surgery, but if you're going to do chemo, I'd be careful not to delay too long. There is some research (see link below) suggesting a lower survival rate for every week past 4 that the start of chemo is postponed. Seems like there's a delicate balance between the need for healing/treating and it's a bit unclear if there's greater risk in starting too early or too late. Did any of your second opinion doctors offer an opinion on this issue?

https://fightcolorectalcancer.org/blog/chemo_delay_after_surgery_reduces_survival_rates/
11/14: Dx sigmoid CC @ 45yo
12/14: laparoscopic colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS (A146T), TP53, SMAD4, ERBB2, pre-surgical CEA 1.0
2/15 to 7/15: XELOX, celecoxib & many supplements
3/16: Ovarian mass, rt ovary removed. Benign fibroid.
9/16: clean colonoscopy
3/17: clean CT
Post-chemo CEA: 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6
Mom to a 3 & 5-year-old

cbsmith
Posts: 32
Joined: Sat Nov 28, 2015 11:45 am

Re: PET Scan Results - More Cancer???

Postby cbsmith » Wed Jul 19, 2017 6:52 pm

I was told by my oncologist every week after 6 weeks post surgery decreases the chemo effectiveness. In Canada the standard is to start 6 weeks post surgery barring any complications.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Wed Jul 19, 2017 7:33 pm

Hi, everyone who chimed in. re" If this is also your husband's feeling about your local Onc/Cancer Center - then to me this does not sound good for the future " Yes. In fact, it was my husband who wanted me to make a couple of complaints to the advocate about some other very disconcerting events that have transpired previously, but I didn't follow up because I was too busy with a case at that time to do so. Husband and I both like Dr. Zhu (onc) very much and husband will be going with him as his primary oncologist.

Re: time to start chemo post surgery, thanks for the input. On a related note, we have been waiting this week for his surgeons to call to schedule a consult and the surgery. I wish they would get a move on!
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

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Fri Jul 28, 2017 3:58 pm

My husband and I had a consultation with his Mass General oncologist, liver surgeon, and colorectal surgeon today. He was given the option between open liver resection with open sub-total colectomy or laparoscopic liver RFA (radiofrequency ablation) with laparoscopic sub-total colectomy. He decided to go with LAP RFA/LAP colectomy because the chance of the liver tumor "coming back" with RFA is less than 10%. He won't need any type of stomy nor will he need a j-pouch. The surgery will be scheduled for sometime in mid August. He and I are so ready for take 2!
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

User avatar
LPL
Posts: 282
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: PET Scan Results - More Cancer???

Postby LPL » Fri Jul 28, 2017 4:55 pm

mpbser wrote:
He was given the option between open liver resection with open sub-total colectomy or laparoscopic liver RFA (radiofrequency ablation) with laparoscopic sub-total colectomy. He decided to go with LAP RFA/LAP colectomy because the chance of the liver tumor "coming back" with RFA is less than 10%.

Can I ask what they said the chance of the liver tumor 'coming back' was with open liver resection? My hubby's CRC liver Surgeon never gave him the option of anything else then open surgery.

Best of Luck to you with the next step mid August !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Fri Jul 28, 2017 5:30 pm

100% chance against it returning with surgery so long as the surgery has clear margins :)
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

mpbser
Posts: 252
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Fri Jul 28, 2017 5:40 pm

P.S. The reasoning for the option of RFA is that the spot is very small. However, I'm not sure I heard him correctly. On our first phone call, one I had with the liver surgeon a couple of weeks ago, I thought he said the spot was 1.5 cm. Today, however, he said it was .5 cm. Either way, each time he did say "tiny" so I suspect I misheard him the first time. Apparently, if the tumor is less than 1 cm, RFA will have at least a 90% of removing the tumor without recurrence. At .5 cm, the odds are even better.
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


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



Who is online

Users browsing this forum: SidneyWorried and 47 guests