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Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Fri Oct 06, 2017 7:01 pm
by NHMike
Bloodwork indicated that Vitamin D3 is now up to 25 from 20. Normal range is 30-39. So more work to do. Oncologist suggested going up to 7K iu/day.

Had the pre-surgical MRI today at B&W. Taking some time off from work (about ten days) and the first half is in Boston for the MRI and meeting with the surgeon next week. Ran/walked ten miles per day yesterday and today. Boston is a walking city.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Oct 10, 2017 10:58 am
by NHMike
Met with the surgeon this morning and she said that the MRI looks good (she also did a digital exam). She said that the odds of a permanent is about 10%.

I was given the choices of Oct 16 and Oct 30 for surgery and Oct 16 was too soon (we're traveling on vacation and there's prep stuff to do). The surgeon said that either date would be fine.

They will do a urethral stent as there's risk of damage there because of where it's located.

They do a pre-op exam one week before the surgery - I guess that's not a bad idea but it means another trip into Boston.

There's a two-day prep, probably similar to a colonoscopy prep.

I'm following three others on another cancer board - two of them have surgery today and one last week and I'm following their posts closely to see what to expect. It seems like a lot of things are similar and some things vary.

There is a two-week post op meeting with the surgeon (not sure whether there's an exam). And she mentioned the reversal. There's lots of posts on this forum about reversals and I'll need to go through them down the road.

My Garmin Forerunner 630 says that I've walked or run 55 miles in the past week and I've got the blisters to prove it. So activity is not a problem at this time. So counting down the day.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Oct 10, 2017 12:05 pm
by susie0915
Sounds like you're doing and feeling well. That's good news that you prob won't need a permanent colostomy. The temp ileostomy
wasn't too bad. I only had mine for four weeks as the blockage I had caused me to have surgery, and the surgeon chose to reverse then
instead of having go back in again. I was happy about that, but it did make it more difficult with chemo. I did have diarrhea issues. So
may have been better if I had the ileostomy during treatment.

Enjoy your upcoming vacation, and yes my prep was basically like a colonoscopy prep. Keep us updated

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Oct 10, 2017 12:26 pm
by Aqx99
My two week post-op visit with my surgeon was more about checking on the ileostomy, the incision sites and removing the drain, than checking my anastomosis. I didn't have a rectal exam until about 2 months after my surgery.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Wed Oct 11, 2017 5:47 am
by NHMike
Thanks for your comments Susie and Anne. I say this a lot but it's always good to know what's coming.

On another note, I just started receiving email notifications of replies again. They stopped around mid-September I think and I had to go to the forum to look for new replies. The notifications now make things easier. I assume that the administrator of the forum fixed something.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Fri Oct 13, 2017 7:39 am
by NHMike
Tumor size was originally 5.2 x 4.5 x 4.3 cm, and 2.7 x 2.2 x 1.6 cm after chemo and radiation. So 100.62 cm^3 to 9.50 cm^3 or a 90% decrease in volume.

Lymph Nodes:

1) 6 x 4 mm to 3 x 3 mm (-62.5%)
2) 8 x 6 mm to 4 x 3 mm (-75%)
3) 5 x 5 mm to 5 x 3 mm (-40%)

No new nodes found, No metastases seen.

I'm now officially impressed with this treatment.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Fri Oct 13, 2017 9:34 am
by susie0915
It does work. All that was left of my tumor was scar tissue. But there were still minimal residual cancer cells in the pathology after surgery, but still impressive. I'm sure your improvement will help the surgeon get clean margins, help with surgery.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Fri Oct 13, 2017 9:41 am
by mpbser
Those are great results. Congrats!

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Fri Oct 13, 2017 3:23 pm
by Aqx99
It does work well. My tumor was still there, but was much smaller. My surgeon said he could see scar tissue where the tumor had been and he was able to wiggle the tumor around, which he couldn't do before.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Oct 16, 2017 12:08 pm
by prs
NHMike wrote:Tumor size was originally 5.2 x 4.5 x 4.3 cm, and 2.7 x 2.2 x 1.6 cm after chemo and radiation. So 100.62 cm^3 to 9.50 cm^3 or a 90% decrease in volume.

Lymph Nodes:

1) 6 x 4 mm to 3 x 3 mm (-62.5%)
2) 8 x 6 mm to 4 x 3 mm (-75%)
3) 5 x 5 mm to 5 x 3 mm (-40%)

No new nodes found, No metastases seen.

I'm now officially impressed with this treatment.

Mike, I understand tumors can continue shrinking for up to twelve weeks after radiation treatment ends. Are you not tempted to wait another few weeks to see if your tumor gets even smaller?

Presumably the smaller the tumor, the better the surgical prognosis.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Oct 16, 2017 6:17 pm
by NHMike
prs wrote:
NHMike wrote:Tumor size was originally 5.2 x 4.5 x 4.3 cm, and 2.7 x 2.2 x 1.6 cm after chemo and radiation. So 100.62 cm^3 to 9.50 cm^3 or a 90% decrease in volume.

Lymph Nodes:

1) 6 x 4 mm to 3 x 3 mm (-62.5%)
2) 8 x 6 mm to 4 x 3 mm (-75%)
3) 5 x 5 mm to 5 x 3 mm (-40%)

No new nodes found, No metastases seen.

I'm now officially impressed with this treatment.

Mike, I understand tumors can continue shrinking for up to twelve weeks after radiation treatment ends. Are you not tempted to wait another few weeks to see if your tumor gets even smaller?

Presumably the smaller the tumor, the better the surgical prognosis.


I think that the protocol at this hospital is 6-8 weeks and I'm right in the middle at 7. The surgeon indicated that things look pretty good after four weeks so hopefully the look even better at seven. I'm facing the surgery with some trepidation of course and part of human nature is to put off things that are unpleasant, and, believe me, it will be unpleasant from the descriptions of the levels of pain in the days after surgery that I've seen over the past few days. But I really would like to get this thing out of me and get through with the mop-up chemo and then get on with my life (though I realize that I'll get scanned and stabbed and probed on a regular basis).

I think that the research is pointing to longer waits and one of the doctors that I spoke with (maybe the Dana Farber Oncologist) talked about this but it doesn't look like research has translated into practice at Dana Farber/Brigham and Womens yet. We've transitioned from 20% survival rates to 80% survival rates and a lot of that is from experimentation with drugs, dosages, timing, duration, radiation, etc. And it appears to me that the research community is still learning.

One other factor is weather in my area. The risk of snow and ice storms increases as we approach December and I will have some challenging logistical issues in recovery and I'd rather the surgery and recovery be done well before the first snowstorm of the season.

So is it tempting? Of course the idea is interesting. But many that I know did go with the standard 6-8 weeks and their results seem to be pretty good. Everyone is different, of course.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Oct 16, 2017 7:56 pm
by Lee
NHMike wrote: . . . We've transitioned from 20% survival rates to 80% survival rates and a lot of that is from experimentation with drugs, dosages, timing, duration, radiation, etc. And it appears to me that the research community is still learning.


That is such a true statement. When I was diagnosed over 13 yrs ago, I was given 30% to 50% of being alive in 5 yrs depending upon who I talked to. Believe me, a lot of advancements in the past decade especially the testing they do on the tumors now. Immune therapy I believe is the next big game changer.

In the late 1970's, a friend's dad was diagnosed with rectal cancer via exploratory surgery (age 46). No colonoscopies then. He was healthy except for his weight loss, active and no pain that I am aware of. 6 months later he was dead. So yes, a lot of advancements in the cancer field in the past 50 years.

Good luck,

Lee

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Oct 16, 2017 9:05 pm
by NHMike
Lee wrote:
NHMike wrote: . . . We've transitioned from 20% survival rates to 80% survival rates and a lot of that is from experimentation with drugs, dosages, timing, duration, radiation, etc. And it appears to me that the research community is still learning.


That is such a true statement. When I was diagnosed over 13 yrs ago, I was given 30% to 50% of being alive in 5 yrs depending upon who I talked to. Believe me, a lot of advancements in the past decade especially the testing they do on the tumors now. Immune therapy I believe is the next big game changer.

In the late 1970's, a friend's dad was diagnosed with rectal cancer via exploratory surgery (age 46). No colonoscopies then. He was healthy except for his weight loss, active and no pain that I am aware of. 6 months later he was dead. So yes, a lot of advancements in the cancer field in the past 50 years.

Good luck,

Lee


I love your signature.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Mon Oct 16, 2017 9:59 pm
by O Stoma Mia
NHMike wrote:... On another note, I just started receiving email notifications of replies again. They stopped around mid-September I think and I had to go to the forum to look for new replies. The notifications now make things easier. I assume that the administrator of the forum fixed something.

There's another thing that you should probably check. This is whether your PM Inbox has a "Delete Marked" option, since you will eventually have to delete some old PM messages so that there is room for new ones to arrive. If you don't start deleting old messages in your Inbox and Sent box then your PM system will eventually lock up to the point where nothing can be done.

When you are checking your messages you should always look at the notice at the top to see how full your mailbox is, e.g.,
    Folder is 1% full (1 out of 100 messages stored)

If you don't have a Delete option in your Inbox you should let administrator know so that the problem can be fixed.

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Posted: Tue Oct 17, 2017 6:27 am
by NHMike
O Stoma Mia wrote:
NHMike wrote:... On another note, I just started receiving email notifications of replies again. They stopped around mid-September I think and I had to go to the forum to look for new replies. The notifications now make things easier. I assume that the administrator of the forum fixed something.

There's another thing that you should probably check. This is whether your PM Inbox has a "Delete Marked" option, since you will eventually have to delete some old PM messages so that there is room for new ones to arrive. If you don't start deleting old messages in your Inbox and Sent box then your PM system will eventually lock up to the point where nothing can be done.

When you are checking your messages you should always look at the notice at the top to see how full your mailbox is, e.g.,
    Folder is 1% full (1 out of 100 messages stored)

If you don't have a Delete option in your Inbox you should let administrator know so that the problem can be fixed.


I was talking about emails on posts, not the private stuff. The emails stopping flowing again so I have to go through the notification section. Email is handy as I get a notification instead of going through a list.