Sloan diagnosis

Helen321
Helen321 Member Posts: 1,459 Member
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
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Comments

  • janie1
    janie1 Member Posts: 753 Member
    good decision
    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
    danker Member Posts: 1,276 Member
    Helen321
    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>
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Helen
    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
    Helen321 Member Posts: 1,459 Member
    danker said:

    Helen321
    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>

    Thanks. I'm looking forward
    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.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Dear Helen
    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

    Thanks Marie who loves
    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?
  • abrub
    abrub Member Posts: 2,174 Member
    Helen321 said:

    Thanks. I'm looking forward
    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.

    I remember my first time walking into Sloan
    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
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Helen321 said:

    Thanks Marie who loves
    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?

    Sounds like Sloan doc's seem
    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
    Momof2plusteentwins Member Posts: 509 Member
    smokeyjoe said:

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

    Helen
    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
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Helen321 said:

    Thanks Marie who loves
    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?

    Hi Helen
    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
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Opinion
    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
    Helen321 Member Posts: 1,459 Member

    Helen
    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

    Hey Sandy, first surgery was
    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.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Hi Helen
    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

    Whiskers is nuts but we love
    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
    Helen321 Member Posts: 1,459 Member

    Hi Helen
    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

    oops
    oops
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Hi Helen
    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

    double
    oops
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Opinion
    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

    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.
  • Helen321
    Helen321 Member Posts: 1,459 Member
    abrub said:

    I remember my first time walking into Sloan
    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

    I read earlier about your
    I read earlier about your kayak, LOVE IT!
  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    Helen321 said:

    Hey Sandy, first surgery was
    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.

    Helen -
    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
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying
    Praying for a beautiful outcome!

    *hugs*
    Gail
  • barbebarb
    barbebarb Member Posts: 464
    tootsie1 said:

    Praying
    Praying for a beautiful outcome!

    *hugs*
    Gail

    Your update
    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
    Helen321 Member Posts: 1,459 Member

    Helen -
    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

    Not sure about the port.
    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.