• Will be starting new chemo treatments

    Asked by magdem on Sunday, January 6, 2013

    Will be starting new chemo treatments

    Saw pancreatic surgeon who gave me a thread of hope to hold on to. Surgery is definitely out of the question with a very slim chance of it happening in the future. He said the lesions in my lungs are so small they can't be biopsied at this time, but that I also have 2 swollen lymph nodes - not good. My cancer markers have gone from 19 to 100, also not good. He was a bit upset with the oncologist who told me 2 years and drew a diagram to show that that is an average and that it could be as high as 5 to 7 years, but in my mind it could also mean less than 2, if it's an average. I asked if we have any options and he said yes, that we are at the beginning and we would try to treat the lungs now. So now I'm waiting for new appointment with oncologist to see what kind of chemo, etc. I keep swaying between sitting back and waiting to die and fighting. How do you live life in the moment? How do you stay positive? How do you stop thinking about it 24/7. I can't shut off my mind.

    8 Answers from the Community

    8 answers
    • nancyjac's Avatar

      magdem, I understand how overwhelming this is for you. I can try to clarify a couple of things to add to what your doctors have said that might help a bit.

      By definition a prognosis can only be based on what has happened in the past and to other people. So any timeline any doctor gives you is always and only based on an average of what has been the actual result for other people in the past. The bottom line is that we are all going to die from something and some point. You could die tomorrow or you could die in 50 years. So, IMO, dwelling on a statistical prognosis, is a waste of precious time.

      I would recommend getting a clarification from your surgeon regarding the lesions being to small to biopsy. If they can be identify from a CT scan or MRI, they can certainly be removed for a biopsy. There may well be other very valid reasons not to do a biopsy, but I doubt that a mass being too small to remove would be one of them.

      Stage 4 cancers are rarely curable but they can often be treated and the cancer managed as a chronic disease, similar to heart disease, diabetes, or hypertension. Doing so often involves some degree of quality of life reduction as does declining treatment.. What route to take will be entirely your choice, but my recommendation is to not drive yourself nuts trying to make that choice until after you have all the relevant information you need to order to made an informed decision..

      almost 8 years ago
    • gwendolyn's Avatar

      Thank you for the update, Magdem. Many of us are thinking about you. With regard to prognosis, there are so many unknowns with cancer. The fact that it's an average or an educated guess may not make it any easier to wrap your mind around. I hope when you start treatment you will feel more in control of the situation. Your cancer will occupy much of your thoughts for a while. Try to stay active and do as many of the things that are important to you as you can. Even the most positive people feel down sometimes. Writing down your thoughts may free up your mind some.

      almost 8 years ago
    • SueRae1's Avatar

      Hugs, hugs, and healing vibes. Take a deep calm breath. Yes it is very hard to not think about it. I find being proactive and understanding as much as I can about what is happening helps calm me down. As Nancy said, you are an individual not a statistic. When they diagnosed me with advanced kidney cancer in July 2009 my oncologist told me that most people with advanced kidney cancer on their liver had a year to live, but I was not most people. My Kidney cancer is stable and being treated as a chronic diseases. My Breast cancer Metastasized in April/May of this year and both my oncologist refused to give me a prognoses - Both my cancer are responding to my current treatment plan.

      There is so much more information about how cancers grow and respond to treatment these days, Try to concentrate on the positives (yes I know it's hard, it took me weeks to get there), be kind and loving to yourself, do things you love and enjoy You are you not your cancer.

      almost 8 years ago
    • SueRae1's Avatar

      BTW if you have not done so already, and you are having infusion therapy, get a port. By the time I got one (2 months into treatment) - my arms were black and blue and my veins barely usable.

      almost 8 years ago
    • Peroll's Avatar

      Magdem, Thanks for the update. A few things you should know.

      1. Half the general population without cancer has spots in thier lungs that will show up on CT scans so there is a possibility that yours are not cancer.

      2. Being "too small to biopsy" means they are likely in the 4 to 5 mm range which is very small and smaller lesions (tumors) tend to respond to chemo better than larger one do so that is good news.

      3. Biopsing spots in lungs is a tricky thing, it all depends on where they are and how big they are. Spots on the edges are easier and less risky to biopsy and spots in the middle of the lungs can be very tricky to get to without risking damaging a vein (this would result in emergency surgery to open your chest and fix the damage and might result in removing a lobe of your lung - no fun). Also with very small spot you have a much higher risk of a false negetive because they miss the cancer. So sometimes the just don't do biopsies.

      4. As I noted in my answer to your previous question the survival time you have been given are statistics that are at least 5 years old and things have changed for the better since then so the 2 and 5 to 7 year estimates are just that estimates. As I noted I have personally hit the 5% side five times in a row so it does happen and it can happen to you, you just have to want to live.

      5 You do not have to stay positive all of the time, no one can. You just need to be positive more than half the time. There are lots of reasons to stay positive as there is a lot of good resarch and treatment development going on. I personally have had 3 chemo drugs and 2 surgical procedures that were not available when I was first diagnosed.

      6. I know it is hard not to think about the cancer all of the time, it is now a part of you and will be with you for the rest of your life. The key is to get to the point where you can do as much of the normal stuff as possible. Once you have a treatment plan in place then it will be easier to make plans. You can plan things during treatment breaks. Cruises are great getaways as you can do as much or little as you want.

      7. You can always seek a second opinion from another Oncologist or other type of cancer specialist if you are not happy with the options you are being given. There are more possible treatments than just surgery or chemo. Things like radiation,radio frequency ablation or cyber knife are some that you should ask about. Ask lots of questions and insist on answers that you can understand. Make your drs think out of the box on your treatment. Become part of your own treatment team and it will help get you the best and latest treatments

      8, You are not in this alone. You have your husband as your primary support and your medical team. But you also have resources like WhatNext to help get the information you need to fight the battle and win. Good luck and let us know how we can help.

      almost 8 years ago
    • Harry's Avatar

      I think your feelings and concerns are perfectly normal. It's a tough situation to be in.

      As others have said, survival statistics don't tell you much about your chances. A median survival stat means that half die earlier and half later. A five year survival stat means that a certain number live five years and the rest don't. None of that tells you which group you are in. Besides, all of the studies are based on treatments several years prior to the publication date. They don't tell you much about the effects of the treatments you get. Your best estimate might be based on your specific responses to your treatment.

      Death is a constant. We all will die eventually. No one gets out of life alive. But, it is different when one expects death sooner rather than later. If it is appropriate for you, then religion and/or prayer might help. Religion has been helping people cope with death for a very long time. If it is not appropriate, then that is okay, too. Other things you might consider could be to enjoy whatever time you have. Priorities have a way of changing. Family and friends can become more precious. Think about what's important for you. You might find fulfillment helping others. That can take your mind away from your worries. And, no matter how bad things are, someone else can be worse off.

      Finally, Fight! Live! Don't just give up. Many here have beaten bad odds and done it more than once.

      almost 8 years ago
    • JMS's Avatar

      You can't stop thinking about your condition, especially because you've been so recently diagnosed, but you don't need to lose hope just because you can't have the surgery. Remember that, statistically, 80% of those who have the Whipple also have recurrence, so the Whipple is certainly not a panacea for this type of cancer. Treatments can prove very effective, as can (I am convinced) one's own approach to a diagnosis of cancer - especially pancreatic cancer. A positive attitude helps both you and those around you cope with what's happened, and, I'm convinced, it also helps the body fight back.
      FYI - the President recently signed a new bill mandating further research into causes and treatments for pancreatic cancer. I've included the link below in case you want to check it out.
      Meanwhile, I'd be happy to answer questions you may have about any aspect of the treatments doctors recommend for you so, at least from the perspective of a patient, you know what's coming at you. JMS
      Here is the link:

      almost 8 years ago
    • janabel681's Avatar

      megdem, I know how overwhelmed I was when I was diagnosed. I decided, after getting over a week of deep depression, that I was going to put all my faith in the hands of the doctors and God. I worry very little about what "might happen", but about what "is happening" in my life at this moment in time. When I was diagnosed, I was told that my tumor on my pancreas was inoperable. It has turned out that the tumor on my pancreas has disappeared! The two tumors that had matasticized from the pancreas were removed last Sept with orthoscopic surgery. (First time ever done at MD Anderson!) One of those tumors was less than 1% viable and the other was completely dead! Chemo does work! I have been in chemo since Jan., 2011.

      almost 8 years ago

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