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Re: PET Scan Results - More Cancer???

Posted: Mon Jul 03, 2017 6:59 pm
by mpbser
We got the results from the biopsies from Wednesday's colonoscopy. All the polyps and the the "tumor" came back negative for malignancy. The large polyp that the GI thought was a tumor looks like it could be a "giant" polyp. My husband and I have done a ton of research and because he does not want to lose any more of his colon to surgery, we are seeking to have the polypectomy done with an alternative procedure that is actually the norm in Japan and in much of Asia: endoscopic mucosal resection or endoscopic submucosal dissection. There is an article in Cancer Annual Report 2013 called Endoscopic Resection for Complex Polyps that describes the procedure. I learned about it by stumbling upon http://www.sease.com/polyp/emr.html.

There are only a dozen or so doctors who are trained and experienced with such procedures. Only a few hospitals include them as a "service [they] provide" in their list of services. One doctor in Portland performs hundreds of these each year but we are hoping that we don't have to go that far. One doctor in Boston at Brigham and Women's hospital performs EMR but he can't see my husband until November. Mt. Sinai has a full range of advanced therapeutic endoscopy procedures that are performed there, so it is looking like we are going to focus on going there.

As far as the abdominal MRI results go, they were as good as could possibly be. Whatever is in the liver looks like it can be ablated, if any intervention is needed, and no resection will be necessary, according to our surgeon friend who incidentally did his residency at Mt. Sinai. Nothing else showed up on the MRI.

When describing my husband's Stage IV cancer to my friends this weekend, I called it "Stage IV Light." If it wasn't for some mild "patchy" foci in the liver, there would be no metastasis and his cancer would be Stage III. This is why I am really hesitant to embrace XELOX/CAPOX with all the toxic, terrible effects of the Oxi-, since the side effects can include blood clots and worsen his heart problems.

- Christine

Re: PET Scan Results - More Cancer???

Posted: Tue Jul 04, 2017 8:19 am
by Utwo
What is a difference between this "endoscopic mucosal resection (EMR)" and piecemeal removal of a large sessile polyp, that is pretty common in North America?

PIecemeal removal requires more skills and not all doctors are willing to do it.

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 5:43 am
by mpbser
I think they are one and the same.

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 8:49 am
by LPL
Utwo,
Thank you for asking that question, I was wondering the same regarding piecemeal removal.

mpbser,
To get that biopsy report must feel very good !
First scary news and then good.
For my DH it was the other way around.. his first colon tumor biopsy found no malignant cells but since 'they didn't believe that' a 2nd was performed and then he got the bad news.

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 9:21 am
by cbsmith
I had the same as you LPL. The colonoscopy found a large number of polyps due to FAP and the biopsies didn't find any malignant cells but after colon remove and pathology testing there were a lot that had cancer but the biopsied spots just happened to not contain any cancer cells.

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 1:11 pm
by mpbser
We are hoping that once removed, the biopsy on the polyp won't reveal cancer cells.

I was worried when we found out what was found in this 2nd colonoscopy, a flat thickened fold, 4 polyps, and one "tumor," that my husband might have FAP. However, I read more on the subject and apparently FAP causes a great number, e.g. hundreds, of polyps to develop. FAP also causes those flat sessile tumors and that's what I was afraid that the "thickened fold" was and would have returned a cancer-positive biopsy.

I'm not sure that EMR or ESD are appropriate procedures for the tumor/polyp, but the Cancer Annual Report article says that "EMR is a leading option for removing large adenomas. There is really no limit on the size or location of the polyp that can be removed with EMR. Surgery is always possible, but in general, adenomas should be removed endoscopically." I have a lot of confidence in Mt. Sinai Endoscopy Center as it is "led by, led Dr. David Greenwald, a world renowned expert in endoscopy, is at the forefront of clinical and research discoveries. {Mt . Sinai does} thousands of procedures every year and are referred some of the most complex cases by gastroenterologists and endoscopists from around the United States." Our surgeon friend says it is one of the top places for colon procedures in the world.

Making an appointment with Dr. DiMaio: http://www.mountsinai.org/profiles/christopher-j-dimaio

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 3:32 pm
by cbsmith
Yes, with my FAP I had hundreds of polyps. I am the only one in my family to have it so it was a spontaneous mutation and I was never screened at a young age to detect it early.

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 5:30 pm
by lpas
mpbser wrote:We got the results from the biopsies from Wednesday's colonoscopy. All the polyps and the the "tumor" came back negative for malignancy. The large polyp that the GI thought was a tumor looks like it could be a "giant" polyp. My husband and I have done a ton of research and because he does not want to lose any more of his colon to surgery, we are seeking to have the polypectomy done with an alternative procedure that is actually the norm in Japan and in much of Asia: endoscopic mucosal resection or endoscopic submucosal dissection. There is an article in Cancer Annual Report 2013 called Endoscopic Resection for Complex Polyps that describes the procedure. I learned about it by stumbling upon http://www.sease.com/polyp/emr.html.

There are only a dozen or so doctors who are trained and experienced with such procedures. Only a few hospitals include them as a "service [they] provide" in their list of services. One doctor in Portland performs hundreds of these each year but we are hoping that we don't have to go that far. One doctor in Boston at Brigham and Women's hospital performs EMR but he can't see my husband until November. Mt. Sinai has a full range of advanced therapeutic endoscopy procedures that are performed there, so it is looking like we are going to focus on going there.

As far as the abdominal MRI results go, they were as good as could possibly be. Whatever is in the liver looks like it can be ablated, if any intervention is needed, and no resection will be necessary, according to our surgeon friend who incidentally did his residency at Mt. Sinai. Nothing else showed up on the MRI.

When describing my husband's Stage IV cancer to my friends this weekend, I called it "Stage IV Light." If it wasn't for some mild "patchy" foci in the liver, there would be no metastasis and his cancer would be Stage III. This is why I am really hesitant to embrace XELOX/CAPOX with all the toxic, terrible effects of the Oxi-, since the side effects can include blood clots and worsen his heart problems.

- Christine


Hi Christine,

Have you done any research on the efficacy of ablation vs. resection for liver tumors (or have your doctors been able to provide this info)? I personally haven't but am thinking I'd want to see some numbers comparing outcomes before committing to one path over the other. Avoiding surgery is always an attractive option, but it would be interesting to see if the recurrence rates are comparable. Just a thought.

Re: PET Scan Results - More Cancer???

Posted: Wed Jul 05, 2017 5:35 pm
by mpbser
Hi lpas,

That's a great suggestion. We haven't gotten that far yet. We have back-to-back appointments tomorrow at Dana Farber and Mass General. I'll post an update Friday or this coming weekend.

Re: PET Scan Results - More Cancer???

Posted: Fri Jul 07, 2017 8:24 am
by mpbser
What a day yesterday in Boston! So much information, so much to think about. Here's a summary:

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. (There is no question that the thing needs to come out. It's just a matter of how.)
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.)
10.) A "Picc" line IV might be an alternative method of Oxi- delivery but this Onc has little to no experience with it and did say that there is a risk of infection with that just as there is with a port.
11.) Onc recommends doing six cycles of chemo, then have liver and/or colon resections, and then do 6 more cycles of chemo.
12.) 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.) We told him that husband has an appointment at Mt. Sinai July 24th to see if the giant polyp can be removed by polypectomy or another non-surgical method. He would like to see that appointment happen sooner, if possible, so I will be calling today to see what can be done, if anything, about that.
4.) Zhu says that the liver mass(es) can be "easily addressed" with RFA but he still recommends surgery. It appears that he shares the above thinking about "getting it all" is more likely with surgery.
5.) Zhu was not convinced that the foci on the liver are cancerous but because the biopsy taken during the hemi-colectomy came back positive, liver resection needs to be done in a rather be safe than sorry manner. (Husband and I are on board.)
6.) The radiology department is going to review the scans again per his instruction.
7.) 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.
8.) Zhu will be sharing the case with his team today and giving it extra attention.
9.) 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.
10.) #9 seems to make sense because the logic is that the chemo will affect the liver in ways that there is more guesswork. I'm not clearly explaining that but it's be a very rough 24 hours.

Overall, we felt more comfortable with Dr. Zhu who took his time with us and was in no rush to finish our appointment. We also just feel more confidence in him generally. At Dana Farber, it felt like we were in a factory but as Mass General, it felt like we were being treated as individuals.

Re: PET Scan Results - More Cancer???

Posted: Fri Jul 07, 2017 1:02 pm
by LPL
mpbser,

A lot to digest for you.

I thought it was Kras that mattered for panitumumab.
"Cetuximab and panitumumab have a favorable survival impact in patients with KRAS wild-type CRC; both agents should be initiated only in patients with KRAS wild-type CRC."
http://emedicine.medscape.com/article/1 ... verview#a1

My DH had 4 chemo before Liver surgery and 8 after. As I understand it 4-6 before (and the rest, of 12 in total, after) is the recommended treatment in Europe.

Re: PET Scan Results - More Cancer???

Posted: Fri Jul 07, 2017 1:09 pm
by mpbser
Thanks, LPL! We just found out that husband is KRAS wild type, so that makes sense. We knew this yesterday and I shared it with the oncologist, so I wonder what other genetic testing he is having done. I have to call them to schedule it anyway, so I will ask then.

I also just got a call from the Mass General surgeon and Dr. Zhu (LOVE their attention so far... I really am feeling good about going with Mass General for the long term and I believe husband is on the same page) this afternoon: liver resection is NOT an absolute necessity and the other options, e.g. RFA, radiation, and even wait and see, are equivalent alternatives. This advice is based on the fact that there is just one tiny spot. This is wonderful, wonderful news.

Re: PET Scan Results - More Cancer???

Posted: Fri Jul 07, 2017 1:19 pm
by MissMolly
Christine:
I hope that your husband will give reconsideration to placement of a port.

I have a port and appreciate its presence every time I have need for medical intervention that requires IV access.

Your husband is beginning a long siege of blood draws, IV infusions for chemo and /or hydration, imaging scans that will require IV contrast . . As well as unexpected twists and turns that may find you at the emergency room.

My veins have been adversely affected by years of corticosteroids. Needle sticks, themselves, are difficult for even IV nurses. A port has relieved me of the stress and pain of multiple needle sticks over time. I consider my port a friend in the otherwise unfriendly terraine of compromised health.

The risk of infection is much less with a port than a PICC line. A PICC line is vulnerable to bacteria finding way into the body through the external tubing. A PICC Line also has a limited viability and needs to be changed every 3-4 months. A port is completely contained in the body and can remain in place for 3-4 years. I am severely immunosuppressed and have had the good fortune of not experiencing a single episode of port infection.

I encourage your husband to revisit the idea of a port. My port truly is an asset and a welcomed companion.

Best wishes in your decision making,
Karen

Re: PET Scan Results - More Cancer???

Posted: Fri Jul 07, 2017 1:42 pm
by Jacques
mpbser wrote:What a day yesterday in Boston! So much information, so much to think about. Here's a summary:

Dana Farber
...
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.)
...

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44791&p=322567#p322567

Re: PET Scan Results - More Cancer???

Posted: Fri Jul 07, 2017 2:43 pm
by cbsmith
I agree on the port. It is way better than the picc line I had at first. Don't have to worry about getting it ET, don't have to go for weekly picc cleanings and flushes.

I've seen patients get oxi via IV and it looks nasty and quite painful. I would certainly get either a picc or preferably a chest port.