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    • #17704
      Colleen Steele
      Keymaster

      Many of us have heard well meaning people say, “Well, at least it’s not Cancer!”. People who declare this are obviously uneducated about Pulmonary Hypertension. We can debate and compare these two diseases until the cows come home, but what I think we would all agree on is that being diagnosed with both PH and Cancer would be devastating!

      As scary as it sounds, this does happen. We have Cancer survivors among our PH family and I hope they will share their experience and give encouragement to those whose battle with PH and Cancer are just beginning.

    • #17711
      Brittany Foster
      Keymaster

      Hi Colleen,
      This is a good topic. I know there are some members who have both cancer and PH. I wonder if people develop PH as a result of their cancer or if it’s something that they have been diagnosed with before their canced diagnosis. I am curious if the medications for cancer have an effect on the blood vessels in the body or create anything like plaque buildup? I personally know that when my grandma had cancer (non hodgkin’s lymphoma) after her treatments it started to impact her breathing and she would get more short of breath. It had an impact on her lungs too.

    • #17777
      Jen Cueva
      Moderator

      Great topic, Colleen! Yes, I cannot even image dealing with PH AND Cancer , we do have several members who have tackled Cancer while dealing with PH! That’s awesome in itself, being a cancer survivor, even more awesome! Y’all are kicking butt!

      I do often wonder if our meds could cause cancer, although I try not to think that. I do know many PHriends living with PH and Cancer.

      I’ve been told by a few who are cancer survivors, that having PH was a huge part of deciding on their cancer treatment and plan of care. I’m wondering if those in our forums have/had that experience as well.

    • #17799
      Robin Webster
      Participant

      I’d only been diagnosed with PH for approximately six months when I was diagnosed with triple negative breast cancer. The most important thing for me in finding an oncologist was to find one who had treated a PH patient (and a patient with a pacemaker) before. I was fortunate to be able to find one. And I took every bit of strength I had to form the words to ask her if she had “successfully” treated any PH patients, because that was the real bottom line, wasn’t it? Fortunately for me, she said that yes, of course, she had! That made all the difference in my attitude going into it. For me, the type of chemo they would have chosen to best tackle the tumor wasn’t an option, because it had a much greater chance of damaging my heart. So they went with “Plan B.” There are so many different types, and more than one can prove successful, so they do have choices. My oncologist and oncology radiologist were based out of the same hospital and medical network as my PH cardiologist and my electrophysiologist, and that was important to me so they could all easily share information and be in contact at every stage. I won’t pretend it was easy, but I do stress that it is do-able. Here I am five years after the completion of my cancer treatment. It’s important to note that every single case is very different. But I am willing to lend an ear to anyone going through this and to answer any questions if I am able.

      • #17807
        Colleen Steele
        Keymaster

        Thank you for sharing your experience Robin! You never know how many lives you might touch by simply sharing your story. I’m sure people will benefit from your knowledge.

      • #17814
        Brittany Foster
        Keymaster

        Wow Robin,
        I cannot even imagine going through all of that and going having the stress of asking your doctor those difficult questions. I have had recent surgeries at hospitals within walking distance to my PH hospital and have surgeries at the PH hospital. It makes all the difference in the world to know that you are going to be monitored by your whole care team and that they are all there WITH a game plan for IF something were to happen. Just knowing that you are going to be looked at and taken good care of really helps ease the mind before going into something so major (especially something as life altering as what you went through). The trust has to be there in order for things to progress and for healing to begin. I hope that you have been on the right track since your treatments and that you are learning more about your body each day. I know I am always learning new things about my health, what I can and can’t tolerate, and that’s all part of it.

      • #17819
        Jen Cueva
        Moderator

        Robin, once again, your story is so inspiring and I am sure others can gain some hope as they read this! I cannot even begin to imagine the devastation this was so soon after your diagnosis of PH.

        I agree that there has to be options as you mention, we are all so different but having a Plan B to go to is just as important. I also agree with you about questioning the Oncologist at the beginning, I find that if we let them know our expectations and ask the questions, we can better be involved in our own care, I mean, WE are the experts of our bodies.

        Thanks for sharing.

    • #17940
      Jo Ann
      Participant

      Or should PAH be called cancer? https://stm.sciencemag.org/content/5/182/182ec71. I have polycythemia Vera (bone marrow cancer) which probably caused PAH (group 5 cause), and after 1 year on experimental treatment to reactivate P53, my PAH seems to be resolved.

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