Help with questions about waiting

scott41
scott41 Member Posts: 1
edited March 2014 in Lung Cancer #1
Can anyone help me with a question regarding time. My Dad was diagnosed with NSCLC a week and a half ago. He has a almost 3 cm adenocarcinoma in his left lung. We have gotten him a CT scan and a PET scan already and there is apparently lymph node involvement but we(and the doctors) do not know to what extent. In other words, we are told that he may be a candidate for surgery or maybe not depending upon what they find during a mediastonodomy. Apparently, you can not tell for sure from just those CT/PET scans becasue the cancer can be hidden in them. We are holding out hope that he is Stage 2 and can have the surgery. I understand that some surgeons don't do a mediastonodomy but instead analyze someone's nodes in the mediastinum on the day of surgery and make the determination then. We have already seen an oncologist and we are waiting for an appointment in 2 weeks to see a thoracic surgeon at Dana Farber who then does the mediastonodomy? My question is: Is this the best approach? Isn't it possible that if the mediastinum is not affected, that it can become so while we wait for these appointments? Is two weeks and then however long after that to do mediastonodomy, and then again waiting for the surgery waiting too long.? What are we sacrificing by waiting. Is it better to have a good surgeon just do the one procedure immediately and not wait than a great surgeon and wait? Thanks for any help....

Comments

  • ernrol
    ernrol Member Posts: 90
    #2
    Scott,
    I had Stage IV lung cancer. I went for a second opinion and it was about a month before I began my treatment. My cancer was inoperable I had Stage IV lung cancer and I have been cancer free since Novembeer2005, and I still have two whole lungs. Reading about people who are having good results helps a lot. My story is posted here. You can print it out and let your dad read it. If he has any questions about any of the things I did he can e-mail me. You can read my story on my web page, just type ernrol in the search box above, and then click on ernrol to the right, or you can click on the e-mail. My diet and supplements are to boost my immune system. Stay Positive
  • Plymouthean
    Plymouthean Member Posts: 262
    #3
    Hi. I was diagnosed on/about May 5, 2001, with NSCLC, 3a. My tumor, in the upper right lobe, involving my lung, trachea, and esophagus, was 4.5 x 5.8 x 7.7 cm in size. A thoracic surgeon performed a mediastenoscopy on/about June 10, 2001. That was about a month after diagnosis. As my medical records indicate, that was considered timely.
    I, too, was originally worried that too much time was being wasted prior to treatment, but, as it turned out, the doctors were in full control of the situation. I think that we all feel, initially, that the doctors aren't moving quickly enough.
    Long story short, I was treated "aggressively" with chemo and radiation, followed by surgery to remove the upper lobe of my right lung. My surgery was on October 2, 2001, and I have been cancer free since then.
    While I fully appreciate your concerns, I would tell you to have faith in your Dad's doctors. In my experience, their patience can be maddening, but they are very good at what they do. Best wishes and prayers to your Dad and you.
  • tfrost
    tfrost Member Posts: 20
    #4
    Scott, you sound like me a month ago. My father was recently diagnosed with Lung Cancer. My entire family felt so out of touch with his treatment and his doctors. I was frantic, upset, and frustrated. We has to wait as well, for a biopsy to schedule with an oncologist. The reason being, is that a primary site has to be determined so the doctor can find the appropriate course of treatment. When his biopsy was scheduled, we were told that they would leave him open until the pathology report came back. If it was operable they would remove it that day. Unfortunatley for my dad he is stage IV. I can honestly tell you it took about 5-6 weeks since that surgery to finally feel like we knew what was going on with the Cancer. I was afraid waiting would affect my dad as well. As it turns out, the week or two has no effect on his treatment. I have used this site to answer so many questions. I also called alot of cancer hotlines to get 2nd opinions.
    Good Luck to you and your dad.
  • kaitek
    kaitek Member Posts: 156 Member
    #5
    Hey Scott,

    Natural reaction and concerns on your part about the response time in the treatment of your dad as I certainly had those exact concerns. If you're not familiar with my story, my mom had gone 5 weeks before confirmed diagnosis of her lung cancer. And she had several less invasive diagnostic tests done before the absolute biopsy.

    Then, she had to be hospitalized for a week until the fluids decreased enough for them to take out the catheter. The doctors weren't too concerned with that wait, which was used to test her further with a MRI for any spread to the brain.

    The oncologist wanted to wait for the incision to fully heal as his concern was that once she began chemo, her immune system would be weakened. Well, he talked to the thoracic surgeon who performed the pleurodesis and the ts advised the immediate start of chemo. So, my mom began her first cycle of chemo almost a week after she was released from the hospital.

    Now, on surgery or no surgery, I know that it is dependent on the size, where the smaller the better in surgical approach. But as you can gather from some of the survival stories, surgery isn't the only successful option. Chemo is a systemic treatment that attacks cancer cells throughout the body. I think at the very least, you should get the chemo and surgery could be an option later or even not needed!

    My mom is doing well with chemo alone. So, just as Plymouthean and others advised, don't worry much about the time delay.

    Best wishes to your dad!! And keep us posted.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #6
    Dear Scott,
    I remember the first time I got a cancer diagnosis, I wanted it out like yesterday so it wouldn't spread or get worse. [Background note: I had breast cancer the first time around, lung cancer more recently.] I was thinking that since it had just shown up on the tests that maybe moving fast would stop it in its tracks. The nurses, doctors and things that I read later, though, convinced me that cancer does not grow all that fast. The spots that just barely showed on a mamogram had been there 3 to 8 years and would not grow all that significantly in a month. Some cancers double every 20 or so days and some only every 200 or more days. The institution I went to said they like to have patients wait no more than a month from the time they are diagnosed to the time they have their surgery or first treatment. That's probably a good rule of thumb, because some cancers are aggresive and you don't want to wait around too long or they'll cause more problems. The month gives you time to consult the internet, friends, other doctors, and plan your attack. I could have gotten faster service in my small hometown with a general surgeon, but I chose to go instead to a university teaching hospital with a great reputation for treating the kind of cancer I had. I've never been sorry, even though it took a little longer and the drive is a headache each time we go back. If you don't like the news or the delivery of it from one doctor, shop around. You want someone who can be honest and supportive, no matter what kind of cancer or how bad it is. Good luck!
  • kesnh
    kesnh Member Posts: 9
    #7
    SCOTT I just read this post today i am sorry to hear about you dad. I have lung cancer and also found myself playing the waiting game in Boston. I got sick of sitting around called the head of Thorastic at Dartmouth up in Lebanon and got seen with in a couple days. The treatment was second to none. I was so well taken care of and well it is Darmouth they know what they are doing. My surgeon is Dr. Bill Nugent he is litterally a life saver. I would choose to be treated up north even if Boston was a more convient choose. I will hit my one year anniversery in october and I am doing great. I am down a lung but doing great. Call Dartmouth!!!!!
    Kathy

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