• 5 am and over thinking likely...

    Asked by mtnrose on Monday, November 19, 2018

    5 am and over thinking likely...

    wondering whether I should be seeing a surgeon first or an oncologist. My GI doc has sent a referral to a surgeon so I'm waiting to from his office sometime this week...hopefully . Should I be seeing an oncologist first instead?
    I'm not sure I feel very confident in my gastro doc as he hasn't explained what to expect as far as treatment goes. But maybe this is how they all are.

    18 Answers from the Community

    18 answers
    • BoiseB's Avatar
      BoiseB

      I know you are sort of isolated but is it at all possible for you to get a second opinion. When I was diagnosed with esophageal cancer the gastro Dr. said everything including pronouncing a death sentance. He was 100% wrong. Since he had determined that the cancer was inoperable he sent me to an oncologist for pallative and hospice care. I got a second opinion from a surgeon. And 8 years later I am still alive.
      Every Dr. is different and we need to get second opinions all along the way . By the way I have had Dr.s ask for a second opinion though not cancer Dr's though. And a second opinion would definately help you have a little more peace of mind.

      25 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I don't know about your particular kind of cancer, but I do know that patients often see surgeons first, if there is a possibility that their tumors can be removed before (or instead of) chemical treatments.

      I think the surgeon will refer you to a medical oncologist right away if that's who you need to see. Your cancer was discovered like mine was - near the holidays. It makes things happen just a little bit slower than when it is found when offices don't close for days at a time.

      @BoiseB is correct that second opinions are always good. So far, I don't know if you have actually gotten an opinion at all except that the biopsy showed a malignancy.

      I also think it is very important to like and trust your doctor. In the end, your life is in his or her hands. I don't think the gastroenterologist will likely have a whole lot to do with your case once it goes to the cancer doctors, but I live where everything is very, very specialized so I may be spoiled by having different doctors/specialists for every little thing.

      Good luck. I hope you get in to see the surgeon soon so that you can find out what you're dealing with and get a treatment plan going.

      25 days ago
    • JaneA's Avatar
      JaneA

      One of my favorite admonitions to myself when I was in active treatment was, "Don't overthink the diagnosis. Don't overthink the cure."

      For many cancers, it is common to see the surgeon first. A colorectal surgeon diagnosed and staged my rectal cancer. But because I was Stage IV, he referred me to an oncologist because he felt that chemo would shrink my tumor making the surgery easier.

      Rectal and anal cancer are typically treated surgically or with radiation. The pathology report might indicate that you need chemo too. I hope that this helps you while you wait. Waiting is the worst part.

      25 days ago
    • JaneA's Avatar
      JaneA

      While I was thinking about you, I searched for Senior Services in your city. Here is the link:

      https://www.gibsoncenter.org/

      They have all kinds of programs plus a knitting group and an exercise group. Most probably, some other seniors who utilize their services have had cancer too. I urge you to check them out. This might be an answer to your prayers.

      25 days ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      My surgeon was an oncologist. I had surgery first, then chemo w/the medical oncologist. The surgeon was the head of oncology at my hospital of choice, so we went w/his schedule of events. It worked out just fine. My two oncologists tag-teamed, so each knew at least approximately what the other was doing.

      25 days ago
    • mtnrose's Avatar
      mtnrose

      Thank you all for your replies. Waking up in the middle of the night gives me too much opportunity to think. JaneA, I am somewhat familiar with the Gibson Center...they mostly provide meals and some activities that sound okay but not really sure that'd be something for me. I know beggar's can't be choosers but I haven't really felt up to playing board games, knitting and quilt making lately. I do really appreciate you're checking this out for me. I may just call them anyways to see if they know of a cancer support group in the area that isn't advertised publicly. I think I have too much time on my hands lately. It seems like I have researched and researched anal cancer ad infinitum, ad nauseum. I've always taken a proactive approach in my own healthcare and always research things...diseases that I have, meds recommended by doctors, etc. Maybe that comes from having some negative experiences with doctors in the past and that my career was in the healthcare field. It's been said that doctors and nurses make the worst patients. :/
      Hoping I hear from the surgeon this week.

      25 days ago
    • BoiseB's Avatar
      BoiseB

      I am sending you good thoughts for your upcoming appointment with the surgeon.

      25 days ago
    • mtnrose's Avatar
      mtnrose

      Thank you, BoiseB.

      25 days ago
    • JaneA's Avatar
      JaneA

      MtnRose - sometimes, we have to "force" ourselves out of our shell. This waiting part is the worst. There is no need to research until you have more details. I "what if'ed" myself sick.

      And you're probably right - healthcare employees are probably the worst patients - best wishes to get some answers soon.

      25 days ago
    • SandiA's Avatar
      SandiA

      Hi! I saw my surgeon first. Actually there were two surgeons. The second surgeon then sent me to my radiation oncologist who then sent me to my medical oncologist. I didn’t quite understand who to see first either, so I guess I just followed their lead. I did find once I got to my medical oncologist it did get a little easier. He sort of ties everything together. But from what I understand if you need surgery that is the first step. At least it was for me.

      I also wanted to send you some good wishes. The middle of the night was the hardest time for me. Like you said it gave me too much time to think. I logged on here a few times around 3 am and found some people up to talk to. Wishing you a good appointment with your surgeon. Let us know how it goes. ((Hugs))

      25 days ago
    • cllinda's Avatar
      cllinda

      I saw the surgeon first after diagnosis. Had surgery and then a second surgery to get clear margins. Met the oncologist a couple weeks after second surgery and was given a plan as to chemo and radiation.
      Many times, the surgery is done to see if it has traveled to the lymph nodes. If it has, then treatments might be different.
      Hugs to you as you start this part of the journey. And feel free to ask questions here.

      25 days ago
    • mtnrose's Avatar
      mtnrose

      Thank you, Sandia and cllinda, for the info. There should be a guide created for the newly diagnosed that would give a person an idea of what to expect...maybe. I guess every doctor handles a person's treatment based on their diagnosis and what they think would be the best first step.
      Hopefully, I'm done "researching" this online for now anyways. I just like to know what to expect or at least a general idea. It helps to relieve some of the anxiety.
      Did anyone have tests before surgery to check for involvement in nearby lymph nodes...or possible metasteses?

      25 days ago
    • SandiA's Avatar
      SandiA

      I did not, but my first surgery was to remove the tumor because it was limiting neck movement and my left arm so either way it had to come out. It was then sent for pathology and that’s when I was told it was cancer but was told it was a sarcoma. They couldn’t get it all on the first surgery so I was sent to a specialist at Georgetown who removed the rest then the plan was to start radiation. But a week before radiation they sent the pathology from the second surgery to another lab for further testing and then it was changed from sarcoma to melanoma. At that point they debated whether to go in for a third surgery to remove lymph nodes but my radiation oncologist thought it was better to start radiation so I did. Before radiation they did do a pet scan to determine if it had metastasized. It had not at that point.

      25 days ago
    • mtnrose's Avatar
      mtnrose

      I'm sorry that you had to go through all that, SandiA. Did radiation resolve it?
      Did you have side effects from the radiation?

      25 days ago
    • SandiA's Avatar
      SandiA

      It did for a while. The radiation wasn’t too bad. It was on my neck so the biggest issue was loss of taste buds, but it returned to normal. Unfortunately the melanoma came back to my lungs, liver, spleen and hip a few months after I finished radiation. I ended up in a clinical trial for immunotherapy. I finished treatment July 2016 and have been NED since then. So it was rough for a while but I am here and beating the odds.

      I just remember starting out and really having no idea what to do next. My doctor and I were talking one day and I said something about driving him crazy. He laughed and said no when you started treatment you did really well. He said it is the in between time that can be nerve wrecking. He was the right. Waitng for the next step was the hardest part.

      25 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      When I wake up in the middle of the night, rather than lying there worrying, i pick up my phone or tablet and i read a book, watch a movie, write a blog, read WhatNext or Facebook ... I have had some sleepless nights since my son died a couple of weeks ago. I refuse to lie awake letting my mind run rampant. There are ways to distract it from worrying about things that cannot be changed.

      25 days ago
    • meyati's Avatar
      meyati

      I was referred to the surgeon first, and the biopsies gave me my diagnosis. Then I went to oncology.

      25 days ago
    • mtnrose's Avatar
      mtnrose

      SandiA, you've been through a lot! It's encouraging to hear of others beating the odds. Gives me hope. Your doctor was right...it is nerve-wracking !
      LiveWithCancer, I am so very sorry for your loss! Sending you a big hug!
      Trying not to worry about the future...it doesn't change what is or what will be. Just knowing what to expect, as much as is possible anyways, helps to alleviate some of the concerns about it all.

      25 days ago

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