• What is the ONE thing you learned or found out about the Entire Cancer mess that you didn't know before?

    Asked by barryboomer on Thursday, March 19, 2015

    What is the ONE thing you learned or found out about the Entire Cancer mess that you didn't know before?

    18 Answers from the Community

    18 answers
    • Ejourneys' Avatar
      Ejourneys

      ONE thing, Barry? Just about everything I've learned is new to me!
      When my GP told me they found cancer, the first words out of my mouth were, "What stage?" I had no idea that it would take time and tests to find that out.
      I had no idea that breast cancer alone has at least 10 different cancer types. I knew nothing about cancer cell receptors, tumor grade, etc. I had no idea that every single cell in a cancer tumor can have a different molecular structure.
      I had no idea that even Stage 0 breast cancer can metastasize directly to Stage IV, or the percentages involved, regardless of treatment. (I had no idea there even was a stage 0.)
      I had no idea how little of the money raised for BC goes to actual research, or that only about 2 percent of research dollars go toward research on metastatic BC, the only BC that kills.
      I had no idea of the many, many different avenues of ongoing cancer research. Simply fascinating.
      I had no idea about all the legislative c.r.a.p that drives up the cost of treatment.
      That's just for starters. Every day I think I learn something new.

      over 4 years ago
    • Traceypap's Avatar
      Traceypap

      I didn't know anything and most of what I have learnt is more from my own research than from the doctors.

      over 4 years ago
    • cam32505's Avatar
      cam32505

      Everybody I knew that had cancer had only had surgery, so I had no idea what to expect from chemo and radiation. I expected the nausea from chemo (not as bad as I thought), but not the pain. I didn't expect pain with radiation, but the side effects were worse than the chemo for me.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      I have been told by a guy in our support group that I am a walking encyclopedia of information. Besides learning all about FL, I know about resources -- support groups, cancer support center, retreats, journals, financial sources.
      I've also learned about me; I can deal with more than I thought.

      over 4 years ago
    • IronMom45's Avatar
      IronMom45

      Medically wasn't surprised by much. Emotionally was a shocker! The reaction from people I thought I knew would be the number one disappointment! Sorry can't stop there, I was shocked at just how disappointing the medical profession doesn't seem to be aware of the lack of congruency of care between hospital, home and treatments. Physically for my cancer the lingering sacral lymphedema and shortness of breath from chemo damaged lungs. Great question Barry very therapeutic.

      over 4 years ago
    • cllinda's Avatar
      cllinda

      I was surprised by how hard chemo was on my body. As the nurses told me about the side effects that could happen, I was confident that I wouldn't get any se's. But boy was I wrong. I think I had almost every one on the list. Cancer is hard physically and emotionally. Many days I would just be in bed crying. Wishing I was anyplace else on the planet. But I did have friends and family that really helped me out.

      over 4 years ago
    • Jalemans' Avatar
      Jalemans

      The one thing that shocked me is how little is known about LMS. Of course I learned a lot of things, but that is the one thing that was such a surprise. They know so little about the cancer I was diagnosed with & the few studies there have been combine other sarcoma patients with it, even though they know they don't act the same. They don't really know how to treat it besides cutting out the tumors. I just believed there were experts in all forms of cancer before this journey. There are no markers or blood tests. If a tumor is inoperable you will die because they don't know what to do.

      The process has been very educational. I've done a lot of research & had lots of tests. It is all interesting.

      over 4 years ago
    • Phoenix76's Avatar
      Phoenix76

      This was one of those "learning experiences" I really could have done without...!

      I found out how painful cancer and the treatments can be; how the fatigue can be devastating; the emotional roller coaster; the kindness of strangers and the warmth of friends - that is, I didn't know the depth of many friendships until I was undergoing treatment.

      Good question, Barry!

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      I just posted this on my facebook and am sending it around. I'm looking for feedback and Ideas of what and HOW we can do this. What is a lot of things we'd LIKE to advocate for etc. etc. I have thought about this for awhile as I started to realize how Helpless we feel and how we have NO Power when we get on the Roller Coaster ride from the first visit to an Oncologist. They tell you what to do and then ask you to pick from column A or B....huh? You ask about the best diet and or about supplements and they just ignore you most of the time with a look like OH Here we go again. They destroy our Immune system and when the treatments are done where is the help rebuilding it. We have trouble getting pain meds from Pharmacies.....Why is there such a monopoly on treatments and why are Oncologists the only Doctors that can guy chemo wholesale, start their own clinic and sell it to us retail...What is this thing between the Docs and The Drug Companies. Why is a Toxic Poison OFF PATENT so expensive and WHY do the Insurance Companies Pay for it. Where is OUR Bargaining power as we are 14 million strong and we have Families. It's an epidemic and the cures are from For Profit Companies doing redundant studies so it seems it's too much money spent. Where is the Urgency of the Government when a person born today has a one in two chance of getting cancer in their lifetime? The Drug Companies mostly let us all down and it's because they're all in a race to patent the next molecule to make a fortune for the Wall Street Firm. Just some things but I could go on all day. Why are there all these drug commercials on TV for Viagra and BP pills but hardly any public service commercials aimed at our kids. We are child abusers feeding our kids and grandkids Dead and Plastic food....and it's making everyone sick. SO...I feel we need to get together and have one large organization to Advocate for problems we have. Why isn't Nutrition and Psychology part of the protocol? I have many more but would appreciate your input. I don't know how to make a website and am dead broke so Maybe somebody else will take this up. BUT I just couldn't not try......We need to be more proactive in our own care and lobbying the Government to Get a greater sense of urgency. IF any other disease came along today that will affect one in two it would be front page news 24/7 but with cancer it's the same old same old with the pink ribbons and marathons and people shaving their hair off in solidarity and on and on and on it goes......Too much killing and not enough work about HOW to FIX the problem. WE cannot Kill our way to health....we must plug the hole and fix the problem. I'm getting nauseous writing this so I'll stop.

      https://www.facebook.com/pages/Cancer-Advocacy-GROUP/410900705753399

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      barryboomer, I think that right now we need to push Congress not to end Obamacare and Medicare.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      I agree Schlegel.....but if it gets all screwed up and the Republicans can't figure how to be affordable and end the pre existing problem WE will get Medicare for ALL....cradle to grave and that's the best outcome. My Group would do a LOT OF lobbying the Government about LOTS of AUDITS and INVESTIGATIONS about everything. There is a lot of fishy stuff going on between the research, funding and what they fund, drug companies and their salesman and middle men the Oncologists, a discrimination against anything beside the mainstream therapy.....why the government won't do more on supplement trials for cancer and on and on. AUDIT the Fed and AUDIT Big Cancer and I think the entire house of cards will fall down. I think for the most part Cancer Patients are being screwed in lots of ways and WE Don't deserve it. I realize we are a huge cash cow for an entire industry from wigs the chemo and fundraising but we are really getting the shaft IN MY OPINION......the foxes are guarding the chicken coop....ugh....feels good to get a little active and pro active......we may die but lets shake it all up for the others coming up behind us.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      The odds are beatable. Stage IV is not a death sentence

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      I was Stage 4 when I was diagnosed ten years ago. Staging doesn't mean too much these days when talking about slow growing lymphomas.

      over 4 years ago
    • AbbyTriple-'s Avatar
      AbbyTriple-

      I found out who my friends are.

      over 4 years ago
    • amontoya's Avatar
      amontoya

      I found out that I am capable of taking care of someone who is incapable of taking care of himself. I'm stronger than I thought.

      over 4 years ago
    • DJS's Avatar
      DJS

      I found out that a diagnosis of cancer wasn't all bad news. As an organ transplant recipient I thought it meant an instant death sentence, I had heard horror stories about treatments, I thought losing my hair would crush my spirit completely, etc. Instead, I learned not to anticipate anything; do your research about the science, not about the emotions. I'm made of tough stuff, and I sailed through cancer. I wouldn't wish it on anyone, but I'm a stronger, happier, better person because of the lessons I learned as I went through that journey.

      over 4 years ago
    • BobStewart412's Avatar
      BobStewart412

      I learned I can do anything that's put in front of me if I'm determined too. I learned how much my family loves me. I learned who my real friends are. I learned the important things in life, and stopped caring about little drama.

      over 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      Correction: Forget about what I posted above about DCIS and metastasis. I think I had a bout of chemo brain on that one. However, Stage I *can* metastasize. DCIS remains in the duct.

      over 4 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more nodal marginal zone b-cell lymphoma questions.  Also, don't forget to check out our Nodal Marginal Zone B-Cell Lymphoma page.