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Sloan diagnosis

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Two surgical specialists, two residents looking in my butt. lol Oh joy. I got a birds eye view since the screen was right in front of me. I'll just keep my day job. Well I was hoping they'd both say the same thing but Sloan says chemo and radiation necessary in very low doses to avoid permanent damage to the muscle. Too risky to do surgery that close to the muscle without shrinking it first and so that no cells flake off during surgery (I forget what term he used) and hide in the area and make it come back. I'm out of the curable category (temporarily, until after the surgery) because this docs thinks the cancer is aggressive and that the last doc misdiagnosed that. He'll look over the slides but won't determine until after his own slides are done during the surgery. It doesn't mean I'm not curable, it doesn't mean it's aggressive, it means he can't say until after the surgery where I stand. 9 weeks is way out of the norm for visible recurrence and he believes the growth is "tethering" explained as growing roots (because it was very bouncy and elastic) which means it wants to stay and also that it implies that it goes deeper than the first doctor diagnosed. So we're doing an appt. with the medical oncologist, appt. with the radiation doctor and then it will be determined what kind, what dose, what extent of therapy is needed (6-8 weeks). Then a six week rest, then the surgery. I'm obviously at this point going to Sloan. They're going to try to get me on the fast track, due to the rate of growth. Feeling very positive about the situation. I'm back at work this afternoon. Going to be missing some days so I figured, get my butt to work. Any thoughts, advice, suggestions what to do, what not to do, would be as always, appreciated! Helen

janie1
Posts: 753
Joined: Apr 2011

Way to go, Helen. First of all, these docs "communicated" more thoroughly. Sounds like they have a game plan. Who knows, but this could have gone the other way and got botched-up right from the git-go. Some things, can't get "un-botched", and this is serious stuff, so go with your better judgement and gut feeling, which it sounds like you already are.
Hugs!

danker's picture
danker
Posts: 1187
Joined: Apr 2012

I too had 5 weeks of chemo and radiation before the resection to shrink the tumor. It's now 2 years later and i'm NED living a normal life. You can too, so hang in there and don't be afraid. Good Luck>

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Thanks. I'm looking forward to being NED! And yes, I woke up in a much more logical state of mind about Sloan. What I realized this morning was when I went to the local doctor, I was just going to the doctors, I've been to that place 100 times but went I went to Sloan, it actually meant I really do have cancer. Secret denial is a wonderful thing.

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

I was terrified, and, yes, it was because SLOAN KETTERING MEANS I HAVE CANCER! The terror also struck when I went to Gilda's Club for the first time, and even my local onc - I'm one of "them" now!

However, now, I've begun to know the people, and I arrive with a smile on my face. (My favorite person at the main desk moved away about a year ago - her welcome was always wonderful, but the guys there are also great.) A major advantage at MSK is that your surgeon specializes in colorectal oncologic surgery, not just surgical oncology. Similarly, your oncologist is a specialist, not a generalist. I quickly grew to look forward to my visits with my surgeon (Paty) whom I adore. A fellow appendix cancer patient was equally enamored of her surgeon, Dr. Guillem, and I've heard wonderful things about the others.

I no longer know much about the oncologists. Mine left to go to (literally) greener pastures. He's in South Carolina now - his wife is a veterinarian, and they wanted to live on a farm.

At the moment, as I am in remission, I don't have an oncologist. I would have been reassigned, but my surgeon agreed to track me, and will refer me to his choice at such time (if ever) that I need more treatment.

I'm glad you have a plan. I have a number of friends who did the chemo before surgery there, and are all in good shape. Wishing you a similar outcome.

All the best,
Alice

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

I read earlier about your kayak, LOVE IT!

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

So very glad you got to Sloan and have gotten that second opinion. Sounds like they have a good handle on your situation.

Best wishes for your treatment plan and sucessful surgery outcome.

Hugs,

Marie who loves kitties

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Thanks Marie who loves kitties. By the way, I have a cat named whiskers who I lovingly call my fleabag (he's gotten out twice and brought home fleas and I've had to fumigate). He's now 15 years old and has a thyroid disorder (and so do I so I joke that he takes after me.) He's a black cat with one white spot under his chin and now that he's aging, he's getting white speckles here and there. What kind of kitties do you have?

smokeyjoe
Posts: 1428
Joined: Feb 2011

Sounds like Sloan doc's seem to have a better handle on how to handle this. Best of luck with the upcoming treatment options.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

I went through the radiation and chemo too - 5 weeks. Is the tumor that is left near the anus? Will the surgery be done through the rectum or APR?
Was the first surgery done through the rectum? Have you had a PET?
Sandy

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Hey Sandy, first surgery was done through the rectum. As I mentioned, it was totally tolerable, chose soft foods, drank tons of water, kept things moving. The tumor is very close to the anus and this doc said he would not touch it without shrinking it first. He said one mishap because it's so close to the muscle and that's a wrap. This surgery will be APR with three incisions, two small, one long bikini and an ileostomy. I had a PET last week and it came back clean except one spot on one ovary which will be checked during the surgery as you can't biopsy an ovary. Could have been ovulation or just general swelling. I'm not too concerned about it. I'm very glad I did it, it was quite a relief. I've also had precancerous cervical, so I thought I should check that to get an all clear since I skipped last year when my doctor died. Will be getting those results tonight, my doctor said she'll call when I got home.

What's your take on the radiation and chemo? He said I'll be able to work and keep my hair but there will be some days my body might say sorry, enough.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

Are you getting a port? The radiation was not bad at all, 10 minutes on the table, no pain. The 5FU wasn't bad, just a pain 24/7 taking shower, sleeping with it. I had problems with my port leaking then got a picc then got a blood clot from picc. Are you having your ileostomy reversed later?
My tumor is higher up in rectum, dr is hoping I won't have a bag, or should I say I am hoping not to have one. The radiation was a pain just because it was 5 days a week. Good luck with Sloan, it will a work out.
Sandy

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Not sure about the port. I'm going to the medical oncologist and radiation oncologist next. Got an appt with them for end of month which they are going to try to move up since he doesn't like the rate of return. Sloan's downside, there are a lot of patients. I knew that going in. I almost had to wait for Dr. Guillem for a month until a cancellation came up (I was vocal about taking one). Ileostomy will be reversed. I read the card they gave me on the way home. I'm hoping it doesn't apply to all because it says 6 weeks on. 6 weeks off. Surgery. Six weeks recovery. Four to six months of chemo keep bag. Then check to see if any sign of disease. If all clear, reversal. Somehow the four to six months after was totally glossed over at today's meeting! Maybe my brain was glossed over. My sister was in as a phone consult. I'll ask her what she wrote down. I checked my notes. No four to six months written anywhere.

danker's picture
danker
Posts: 1187
Joined: Apr 2012

Four to six months with a ileostomy bag seems like worst case. I had my reversal only 7 weeks after resection. Colon does need some rest time, but Doc and you determine how much.The best of luck to you!!!

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

He removed three pieces of my colon and ileum, but did the reconnect while he was in there. I never had a colostomy/ileostomy. It took a while, but things did get back to normal. Even with a resection, an ostomy is not a foregone conclusion.

Alice

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

That would be great not to have an ileostomy!

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Yeah I'm catching on that this is all very play it by ear. Thanks for the luck, I'll take it!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

That sounds like standard protocol they advised you... my docs aren't in sloan but the follow the sloan ways as they all came from sloan..
I have a permanent colostomy due to where my cancer was located and I wanted to be thu with surgeries.. this being my second cancer I kind of feel like every time they open you you have another opportunity for air to get to the cancer and blow it around.. I know very old world thought.. but it seems true for me.
However the waiting is for healing..besure you have a strong bloodcount going into surgery.. as if low healing will be hindered and also the chemo hinders healing as does radiation effects.. so just be patient. All in good time.. that is what I was told..
we didn't get sick overnight.. can't expect to heal overnight.
Best wishes for a speedy recovery...

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Actually my doctor said we do the radiation because we wouldn't want cells just blowing over to anothe spot. He wasn't being literal but that's an interesting thought!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

the hope is that radiation will shrink and contain the cell where they are locally. but if any have escaped they radition won't get to them..
But the blood count is so important.. keep it strong..
if your chemo is to the pertonial area.. I want to advise you to get a doughnut pill to sit on .. it will make you much more comfy...
Hang in there Helen.
Stay stong, laugh and smile as much as possible thru it all..
Donna

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I currently have two kitties who are brother and sister aged 5.

The male is the "boss", he is grey named Smokey. His claim to fame is that when just a kitty he would jump on anything, including humans, to get a higher vantage point!

The female is the gentle soul, she is black & white with what my neighbor calls tuxedo markings. She is very shy but also very loving.

They are great company and with their diverse personalities manage their "mom" (me) in all circumstances...lol.

Love those furry kids!

Marie

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Whiskers is nuts but we love him anyway=) He's a biter who was thrown out of his litter and just when we got him to stop biting, we had to start the thyroid meds so I hold both sides of his head until he opens his mouth (not by the nape since he pulls). He's biting again. Luckily for him, I like him. I like the name Smokey and I've seen cats with tuxedo markings. Very classy cats. Gentle souls are the best. I think whiskers will be around for awhile but when we get another one, I would like a gentle soul who doesn't bite.

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

oops

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

oops

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

So glad that you got a second opinion and that you are happy with that decision. Can't remember what you had cancer of first was it the rectum or someplace else and did you have treatment. My schedule was six weeks radiation/chemo, six weeks healing then surgery, six weeks healing then chemo. Glad you had doctors that knew of your situation and have a plan for you. Thanks for the update and at least you now have a schedule of what is going to happen soon.

Kim

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Rectal and I had a resection. I hope I don't have to have it after also, that wasn't mentioned. I'm realizing that doctors really just don't know and you just sort of go with it as it happens. You try it, see what works. Catching on! Thanks Kim, it is good to have a plan. Feels better. Have a great weekend! I'm heading home, hitting my garden and breathing in the June air.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Praying for a beautiful outcome!

*hugs*
Gail

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

So glad you got in at Sloan....praying for your positive outcome and getting back to your garden which will help with recovery during these summer months!
Barb

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

I forgot one thing, and then there's the night! Woke up in a panic. I'm recognizing the pattern, trying to "talk myself off the ledge" but this sure does stink. It's 2:15 in the morning here and I'm tired as heck. I went to bed feeling fine. Secret denial gets you every time. Sloan told me today, hey by the way, you have cancer. I wish they wouldn't tell you worst case scenario every time you go in. Just tell me I don't know. Don't throw around words like aggressive but I won't know until after the surgery. Don't say I'm not sure you've been diagnosed right, I'll check the slides and get back to you. Either look at the slides before or wait until you do and call me. The worst case attacks your subconscious. I thought I was fine. On the surface, I am. Thankfully it's a Friday, no work tomorrow. I should be sleeping again by Monday.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Best wishes, Helen. Sloan sounds like a great place and you're getting top care. We do hang on the words, though, don't we? My original dx is etched in my brain forever, but I try my best to not let that define me. I wish you all the best and it's good to hear you've got a great team at Sloan helping you through this. Dan

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Thanks Dan, we sure do. And every time I get a grip from the last visit, they throw new curves at me that I didn't see coming. I go in with my big smile and walk out thinking okay so you didn't see that coming but it's okay (now convince yourself that it's true). Thankfully within a few days I let it go, move on and wait for the next appt. Handling it much better than in the beginning.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

are often the most difficult part of walking this cancer path. I hear you about waking at 2:00 and going, "Oh no!" And we are adaptable creatures, thank goodness, and can learn to see through the demons that grab us 2:00AM :) Best wishes for a great surgery and outcomes. Will be thinking of you!

all the best, Leslie

danker's picture
danker
Posts: 1187
Joined: Apr 2012

Yes, we all handle it better as time goes by. It will continue to get easier, so smile a lot. Good Luck!

danker's picture
danker
Posts: 1187
Joined: Apr 2012

Yes, we all handle it better as time goes by. It will continue to get easier, so smile a lot. Good Luck!

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