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Thread: Never thought I would post in a Cancer Forum...

  1. #11
    Administrator Top User lisa1962's Avatar
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    imorton:

    Sorry you still feeling the effects of the bronchoscopy but hopefully today finds you feeling much better.

    Good luck today at the PetScan appointment. Keep us posted on how your doing and definitely let us know what happens with your appointment on Wednesday.

    Lisa

  2. #12
    Senior User IndyLou's Avatar
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    Hello, imorton--

    I'm sorry that you find yourself here, and that you're currently dealing with a lot of health concerns related to your breathing and lungs. You do sound very lucky to have such a good medical team, and they're moving at a speedy pace. I would like to offer some practical advice.

    Given where you are--you have lots of tests and lots of appointments coming up. You will (or may) have lots of questions, either before or following a test/appointment. If your GF, a family member or friend can accompany you during your visits, it would be ideal. They can offer another set of ears, and write down any notes or questions that may come up during your visit. Your ears may be hearing, but your mind is processing things differently--you may focus on one aspect, and completely forget another. The appointments and discussions may be a blur. Let the person accompanying you help you remember things, and be there for you for support.

    As others have pointed out, it's not cancer until you've been diagnosed by a doctor, but you have some rather serious-sounding scans. In some ways, the next week will fly by, but in others--especially in the time when you're waiting for test results--it can take an eternity. You are where you are physically, but should it turn out to be cancer, many advances in treatments have been made with lung cancer. As many have pointed out, they're living years after their diagnoses, and have reason to believe they'll continue to do so.

    One final thing--if you have not done so, please do what you have to do to give up smoking. For good.

    We'll look forward to hearing the results of your upcoming tests. Please let us know if you have any questions or thoughts.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED

  3. #13
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    I would like to thank everyone who has responded. It is very kind of you...

    UPDATE: I don't know if it is my luck, but the PET Scan was a "mental nightmare" in as such as I can't breathe when laying on my back. I ESPECIALLY can't breathe with my arms over my head, so at the 8 min mark, I was ready to ABORT.

    It feels like someone is sitting on my chest and making EVERY breathe require concentration and a huge effort.

    This is when the technician than let me know there was still 24 minutes left.... Here started the mental battle to force a breathe for the next 24 minutes...

    Anyways, thank god, I didn't abort the PET Scan because I really need to get that info to my Lung Specialist.

    Again, thank you for listening and giving me a way to vent this experience out.

    PS: for the last few days, I have needed to double my Dilaudid intake to handle the pain whenever I wake up. I cannot seem to sleep more than 2-3 hours in a row, and when I wake up, I feel like dying. It takes @ 1 hour for the pills to start to take effect.

    Again, sorry for sounding so negative, but the pain has been increasing in the last few weeks.
    Last edited by imorton; 07-18-2017 at 12:59 AM.

  4. #14
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    Oh, yikes. If you find yourself in a position like that again with the scan, be sure you let the technician know that's going to be a problem. There must be something they can do about it.

  5. #15
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    Hi Guys & Girls, just wanted to make an update regarding our DIAGNOSIS appt, as we have gone to see the Lung Specialist, who than transferred us to the Head Oncologist.

    They have all received the necessary test results from the Blood Tests, X-rays, CT Scan, Bronchoscopy, and PET Scan, and unfortunately the news is not good. It is Stage4 Small Cell Lung Cancer, which has advanced into the bones, liver, and spinal column, and possibly into the brain. They want to send me for a Brain Scan early next week, and get me started on Chemotherapy for 3 months.

    They said that I have @ 1 year to live, and that the prognosis is not good because of all the spreading...

    Naturally the news devastated my GF and I, and we will try and recover from the shock this weekend... thank god that we have good lines of communication together because we are both living this from different sides of the coin.

    Some good friends of ours suggested we might want to get a 2nd opinion, and I partially agree. However, I don't see how the diagnosis will be any different, however maybe they have "other" treatment options.

    The Head Oncologist stated that because of the size and vastness of the cancer, CHEMO is the only real treatment to stop or reduce the growth, but ultimately the "disease" will win. The chemo would help to make for a "better quality of life" and do it's best for prolonging the situation.

    What do some of you suggest, as I am all ears, and my EYES are fully open to ideas...

    Again, thank you from the bottom of my heart for listening and responding.

    IAN

  6. #16
    Administrator Top User lisa1962's Avatar
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    Ian

    I am sorry hearing this news and we had to move your thread here to the LC forum.

    Hold tight, others will chime in and as soon as i get a moment, i will respond further.

    Lisa

  7. #17
    Administrator Top User lisa1962's Avatar
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    Hello Ian:

    Ok, lets try and grasp this diagnosis. It is a difficult one and that is putting it mildly. This won't be easy Ian which I am sure you know. However, treatment for LC has come along way in just the past couple of years with new treatment options approved and available to certain candidates.

    I do have to agree as far as a second opinion. Where are you located Ian? I strongly suggest seeking a second opinion from a National Cancer Center one that specializes in LC or make sure your doctor will be conferring with a center to establish the best possible treatment available for you and options for clinical trials and/or immunotherapy.

    Now that a diagnosis has been made, a lot of things will be thrown at you and understandably, it can get overwhelming pretty quickly. I would put together a notebook and write down your questions and concerns and bring it with you to your appointments. This will be a good tool for both you and your girlfriend to reflect back on to make sure all your concerns are addressed and you are in complete understanding on what is being said to you by the medical team.

    Try to remain positive. While your situation is not good and the doctors are saying "one year", keep in mind that it is based on statistics on the overall population not on an individual basis. We have an older gentleman here, icap3 a.k.a, Zim who I am sure will chime in. He has been living with stage IV for many years now and living his life to the fullest.

    Ian, we are here for you and will offer our support without hesitation so please do update us when you can or even vent if you need to. We may not always have all the answers but we are very good listeners.

    Stay strong Ian,

    Lisa

  8. #18
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    Really sorry to hear this, Ian.

    I agree about seeking a second opinion at a major cancer center if you can. The advantage, as you say, is likely to be in treatment rather than in diagnosis. They'll have access to the very latest treatment options including clinical trials.

    Are you in the US? Canada?

  9. #19
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    I'm not at home right now, but to let you know that I'm in Canada, and not in the US. I don't know if that's a good thing or a bad thing?

  10. #20
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    Well, it's a good thing in that you have your single-payer health insurance there... if you're Canadian, I mean. So there's the Princess Margaret Center (Ontario Cancer Institute) in Toronto; that's a top-ranked center and they do lung cancer research, which means that they'd be able to give you the most up-to-date advice about current treatments and also about clinical trials if you want to go that route.

    The Santé Montérégie in Quebec is also a world-ranked major hospital but I could figure out if that included lung cancer treatment and research because the stuff I was trying to read about it was in French.

    If you're American and just hanging out in Canada, then if you have US insurance the top cancer centers in the northeast US are Sloan Kettering in New York and Dana Farber in Boston.

    There's also the McGill University Health Centre in Quebec, which has been ranked a top research center in Canada.

    I don't know which if any of those is close enough to you to be convenient...

    When we had to travel for my sister's cancer treatment (she had GBM, with which she survived more than twice as long as they said she would) we received assistance from the American Cancer Society, which operates free lodges near major cancer centers. Whether the Canadian Cancer Society also provides this kind of lodging I don't know. They do provide support and services of various kinds, though. You may want to register with them; the hospital where you've been seen will probably help you with this.

 

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