To Wait or Not to Wait - Advice Needed

Fitlisa
Fitlisa Member Posts: 99
edited March 2014 in Colorectal Cancer #1
Hi All,

Back on Dec., 10 during what was supposed to be a "routine" laproscopic procedure to check for scar tissue etc. as my chemo had ended, my surgeon found that I have peritoneal carcinomatosis. This is a very rare condition sometimes called "seeding" where the cancer spreads to the abdomen, liver and other organs. The prognosis is grim and my oncologist told me that, if untreated, I would have 6 months to live.

The surgery for this condition is huge, approx. 12-14 hours of surgery followed by up to 28 days in hospital. We sent my records to Dr. Sugarbaker in Washington who is the leader in the field and the pioneer of the surgery necessary to save my life, called cytoreduction surgery.

We found out today that the earliest Dr. Sugarbaker can perform the surgery is March 17. There are very few surgeons in North America (the world actually) who perform this surgery. One of the surgeons is here in Cincinnati where I live, Dr. Loewy.

Here is my dilemma: My surgeon here in Cincy is friends with Dr. Loewy and said that if Dr. Sugarbaker couldnt perform the surgeon quickly he could get me into Dr. Loewy quickly. So, do I wait until March 17 for Dr. Sugarbaker in Washington or do I go with Dr. Loewy in Cincy likely sometime in Jan??? I am meeting with my surgeon tomorrow to discuss this and I am hoping that he will give me his honest opinion as to whether I can afford to wait (its 3 months into my 6 months if what my oncologist said is correct about my time). I also plan to meet with Dr. Loewy to see what he has to say.

I guess I am just so confused right now....I feel fine, hard to believe this is even happening to me as everyone thought I had done so well after my resection (Stage III at that time) and after my chemo when ended this past Nov.

I guess I am looking for feedback - I know its not an easy situation but advice from you guys is the best advice I have found so far.

I wish everyone the very best in the upcoming New Year!

Lisa

Comments

  • spongebob
    spongebob Member Posts: 2,565 Member
    #2
    Lisa -

    A the wife of a good friend of mine had exactly the same thing. Her uncle is a surgeon who does that same surgery. She had it ASAP (granted she had a connection) and you know what? Today, two years later, she remains NED. I believe her uncle was in Canada - she is Canadian by birth.

    Anyway, not knowing all of the minute factoids to be considered in a decision matrix, I would go with the local Doc in Cinci. You are absolutely right, not many docs in the world do that surgery and you have one on your doorstep. They are all highly qualified and I believe time is of the essence here.

    Go see the local guy and see what sort of vibe you get after talking to him - trust your inner voice.

    I ant so much for you to be well, Lisa. the sooner you are, the better in my book. Besides, 28 days in a local hospital will be a lot easier on your family than your being 28 days in a DC hospital (besides, take it from me, the traffic in Cinci has GOT to be better than the traffic in DC!)

    - SpongeBob
  • deneenb
    deneenb Member Posts: 130
    #3
    Lisa,

    I can't give advice on which Dr. to go with but I wanted to tell you that when my Dad was diagnosed with stage IV in June he already had the peritoneal carcinomatosis. We went to see a Dr. at Sloan Kettering in NYC who is arranging for my father to have surgery sometime in March. Our original surgeon made us think in June that my father was going to pass very quickly. The Dr. at Sloan said that people with my father's condition have lived 3 - 5 years without surgery. Right now my father is doing fantastic. He is getting his 11th treatment of Folfox and avastin on Monday. Has had relatively few side effects (some tingling in hands)and his oncologist up here is amazed at how well he is doing. We opted to combine a nutritional/supplemental treatment plan along with the conventional right from the start and I think it is paying off. My father is 6 1/2 months post surgery and doing fantastic.

    I know this doesn't help you make a decision but maybe it will ease your fear a bit.

    Best Wishes,
    Deneen
  • jsabol
    jsabol Member Posts: 1,145 Member
    #4
    Hi Lisa,
    I am always SOOO impressed by how calm and thoughtful you are about your treatment. I know that being informed makes us all better "health comsumers"...keep up that good work.
    About the surgery dilemma....I had a slightly similar situation with my colectomy surgery. The original doc that my PCP highly recommended told me at my urgent pre-op appt that he would be away for 3 weeks and we could schedule the surgery soon after his return. He felt there was little risk involved in waiting (mine turned out to be a "moderatley aggressive tumor", stage III). Initially I agreed, but over the next weekend, I just felt that it would be too hard to watch the days go by. Went to the next recommended surgeon, and she was great, the surgery went very well, and her attention to post op epidural and no NG tube made the recovery far less uncomfortable.
    Had my thyroid out this summer, for totally unrelated reasons. Referred to medical center in town, as it was not quite routine surgery. Same thing...the highly recommended head of the department could not fit me in his schedule for a few months. His associate was more available. Turns out the associate is Atul Gawande, who is brilliant, published, compassionate, and highly skilled. Successful surgery again. (By the way, while I was waiting for that surgery, I read Lance Armstrong's book from cover to cover, as my surgery got pushed back. If you haven't read it, RUN to the nearest book store and get a copy. I find it truly inspirational.)
    So...diferrent circumstances, but as SB said, these folks don't get to be top surgeons at their hospital by accident.
    Hope the opinions help; keep us posted and keep hanging in there. Many prayers and positive thoughts are coming your way. Judy
  • Btrcup
    Btrcup Member Posts: 286
    #5
    Hi Lisa, sorry to hear about your dilemma. Believe me, we know what you are going through. We still have not met with the Hopkins people. Scott is going to call his oncologist today. The doctor who we are supposed to be meeting with is Armond Sardi. He works out of St. Agnes down here in Baltimore, but will perform the surgery at Hopkins.

    Scott is feeling well too. Aside from tiredness, he is eating well and slowly getting his strength back. He even went to work for a couple of hours yesterday to answer mail and voicemails.

    I don't think I would wait if I were you. Our oncologist told Scott he needs to schedule his surgery for Feb. and that's what we plan to do. I will keep you posted.

    Please remember you are in our prayers, as is everyone on these boards. Happy New Year!

    Linda (Baltimore)
  • andreae
    andreae Member Posts: 236
    #6
    Dear Lisa,

    First wanted to say that I am so unbelievably happy that they can operate. You are so very brave, such a big surgery... With fantastic results I understand. I'm sorry you are left with this decision. Remember the days when choosing what to wear was your hardest decision?! LOL. Those were the days... My gut tells me ASAP. I know those that do the operation are all well-trained and I have no doubt you would be in the best of hands. Ooh, quick story. Initially, I was to be operated on by a no-name, run of the mill doctor. That doctor then had an accident (he sliced his hand cutting potatoes... NO JOKE!). My radio-oncologist seized the opportunity to set me up with the world famous CRC surgeon Dr.Gordon (he wrote the gold-standard book!). I only found out after the surgery that many doubted that my tumor could even be resected and at the very least they believed that I was going to lose my whole vagina. Well, tumor resected, clear border, and I still have some intimate parts left to work with! Destiny intervened when necessary. Had it not been for my fantastic surgeon... Go with your gut.

    The best of luck to you lisa and know that you are on my mind and in my heart. You are so very, very courageous and I know the surgery will be a success.

    Lots of love,
    Andrea
  • Fitlisa
    Fitlisa Member Posts: 99
    #7
    andreae said:

    Dear Lisa,

    First wanted to say that I am so unbelievably happy that they can operate. You are so very brave, such a big surgery... With fantastic results I understand. I'm sorry you are left with this decision. Remember the days when choosing what to wear was your hardest decision?! LOL. Those were the days... My gut tells me ASAP. I know those that do the operation are all well-trained and I have no doubt you would be in the best of hands. Ooh, quick story. Initially, I was to be operated on by a no-name, run of the mill doctor. That doctor then had an accident (he sliced his hand cutting potatoes... NO JOKE!). My radio-oncologist seized the opportunity to set me up with the world famous CRC surgeon Dr.Gordon (he wrote the gold-standard book!). I only found out after the surgery that many doubted that my tumor could even be resected and at the very least they believed that I was going to lose my whole vagina. Well, tumor resected, clear border, and I still have some intimate parts left to work with! Destiny intervened when necessary. Had it not been for my fantastic surgeon... Go with your gut.

    The best of luck to you lisa and know that you are on my mind and in my heart. You are so very, very courageous and I know the surgery will be a success.

    Lots of love,
    Andrea

    Hi All,

    Man, I really do think you guys are the BEST!!! I knew that this was the best place for me to come to seek advice. I know my question is a tough one to answer and I truly do appreciate all of your insights and I think you are all right. Time is definitely of the essence since this decision will effect the rest of my life. I also totally agree that I will get a vibe when I meet with the local doctor and that will definitely help.

    You are all so special, we are all so amazingly strong and I have more respect for all of you than I could ever express.

    I will keep you posted and thanks again from the bottom of my heart.

    Lisa
  • Kanort
    Kanort Member Posts: 1,272 Member
    #8
    Hi Lisa,

    I applaud your bravery. I have never heard of anyone else having a routine laproscopic procedure to look around or check for scar tissue. I'm wondering if that is something I should ask for when I see my oncologist for my three month check-up next week?

    Anyway, I think you will definitely know the answer to your dilemma after conferring with the area surgeon. I like others believe that the sooner the surgery the better.

    Wishing you a speedy and complete recovery.

    Kay
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #9
    Fitlisa said:

    Hi All,

    Man, I really do think you guys are the BEST!!! I knew that this was the best place for me to come to seek advice. I know my question is a tough one to answer and I truly do appreciate all of your insights and I think you are all right. Time is definitely of the essence since this decision will effect the rest of my life. I also totally agree that I will get a vibe when I meet with the local doctor and that will definitely help.

    You are all so special, we are all so amazingly strong and I have more respect for all of you than I could ever express.

    I will keep you posted and thanks again from the bottom of my heart.

    Lisa

    Hi Lisa!

    I hardly have anything more to add to all the wonderful posts previous....I just think that if only a few in the world do this and you have one right there and you are needing this kind of rare surgery....well I just do not believe in coincidences. It could very well be a gift to you to have someone local. I agree with SB too for the recovery process being close to home.

    And as everyone has already said trust your gut when you meet with him.

    Keep us posted and you are kept in my prayers daily.

    peace, emily who is thankful for my hernia surgery which gave my surgeon an opportunity to take a look see around in there too!
  • aspaysia
    aspaysia Member Posts: 250
    #10
    Fitlisa said:

    Hi All,

    Man, I really do think you guys are the BEST!!! I knew that this was the best place for me to come to seek advice. I know my question is a tough one to answer and I truly do appreciate all of your insights and I think you are all right. Time is definitely of the essence since this decision will effect the rest of my life. I also totally agree that I will get a vibe when I meet with the local doctor and that will definitely help.

    You are all so special, we are all so amazingly strong and I have more respect for all of you than I could ever express.

    I will keep you posted and thanks again from the bottom of my heart.

    Lisa

    Lisa, a lot can happen in three months. Have the surgery post haste. Don't wait for some celebrity doc to operate. It is your good fortune that you do not have to travel on top of everything else involved in this operation.
    My first doctor was assigned on an emergency basis and he did fine until I presented with an obstruction. Not being knife-happy, he took a wait and see approach but had to leave town when it came time to operate. His boss, the chief of surgery, took over and did what was a pretty routine task. Duke is a big teaching hospital and I wonder which resident actually wielded the scalpel. Dr. Big has operated on the King of Saudi Arabia and I seriously doubt that he did litle more than supervise. All the nurses on my floor were aflutter when he swept in with his entourage to pay me a visit. I enjoyed the caberet.
    It all turned out fine in the end but I missed my regular guy. We had a relationship that continues to this day and he will be my choice for any further surgery.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #11
    Kanort said:

    Hi Lisa,

    I applaud your bravery. I have never heard of anyone else having a routine laproscopic procedure to look around or check for scar tissue. I'm wondering if that is something I should ask for when I see my oncologist for my three month check-up next week?

    Anyway, I think you will definitely know the answer to your dilemma after conferring with the area surgeon. I like others believe that the sooner the surgery the better.

    Wishing you a speedy and complete recovery.

    Kay

    Strewth Lisa--how do you find the courage to come across so cool???? I'm sending you a big hugg from oz babe!!!(((((((((((LISA))))))))))))))
    I have to agree with Sponger here. Speaking personally I think that days waiting would seriously get to me and the extra stress would play on me. Are you able to discuss the surgery with Dr Loewy? Also having the surgery locally has to have its benefits re; recovery.
    I really think you need to ask yourself if you would be able to cope with waiting so long Lisa.
    Our prayers are with you babe,luv n huggs, kanga n Jen
  • jana11
    jana11 Member Posts: 705
    #12
    Lisa, I agree with all the others, just wanted to tell you I think you are amazing!!!

    Also, I don't think it is fair for a doctor to say "6 months" NO ONE knows. You sound so up beat, positive, and strong. Keep it up.

    I also agree that local surgery and recovery has it's many benefits. If you decide to wait for DC - ask about chemo until then. So many options. Continue to smile.... and keep us posted.

    You will remain in my thoughts and prayers. jana
  • taraHK
    taraHK Member Posts: 1,952 Member
    #13
    Hi Lisa. I am so sorry to hear about the peritoneal carcinomatosis. You seem to be tackling it head on and with courage. I'll add my "two bits" to the surgeon dilemna: my 'gut' reaction would be to go with the local surgeon, who can do it sooner. However -- I wonder if you can get back to Dr. Sugarbaker and see if an earlier surgery can be arranged with him. I'm sure he's busy, etc etc -- but -- you never know - there can be cancellations, or sometimes "the sqeeky wheel" works. Hope your own surgeon can give you some useful advice. Thinking of you!! Best of luck!!
    Tara
  • colsie
    colsie Member Posts: 24
    #14
    Lisa -
    You and so many of the others are so amazing. You have your own worries going on, but take the time to encourage another.
    I think your friends are right about not putting it off. Too much time to wait is too much time to worry. Besides, the world is full of great people that don't have big reputations. At least locally you'll have your own supports.
    I hope you get in quickly
    Colsie
  • taunya
    taunya Member Posts: 390 Member
    #15
    Hi Lisa,
    I don't have anything to say that others haven't said better. I just want you to know I am thnking of you. I am so impressed by your attitude, you are a survivor of the first order. I would like to know how Dr. Sugarbaker feels about you waiting. Is he as anxious as the Doc who thinks it should be done posthaste? I am inclined to get it done quickly but if Doc Sugarbaker doesn't feel the need....hmmm. How do you feel about it? I thinkit is true as was said earlier that it is easier to recover close to home, but I realize that is probably not your top concern. I am sure you will make the right choice. Gather all of the information and you will know what to do. We will all be here for you.
    Love and Hugs,
    Taunya

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