Worried about possible lymphoma (bleeding, health issues, depressed, exercise)
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
At other times (like now) I feel 100% normal. I do not doubt the pathology report and yet there are times I think: “How can I be so sick, yet feel so well?”
I have also learned the chilling fact that often people with stage 4 lung cancer (and other stage 4 cancers as well) can be almost completely asymptomatic, at least at first.
It happens unfortunately. Many are taken completely off guard when they get a cancer diagnosis. Been there done that twice now. It rocks your confidence in this tissue house you've been so blithely inhabiting. We forget that the body is incredibly complex but also incredibly tough. Things can go wrong often without any obvious risk factor. There are negative legacies hiding in our DNA we may never realize and there are accidents simply because we are imperfect living organisms exposed to the world.
Other people also love to blame the victim, assuming they only ended up with a cancer diagnosis because they abused themselves (diet, smoking, alcohol, lifestyle). Just not true in many cases. Taking care of yourself obviously can reduce your chances but there isn't any guarantee you'll remain cancer-free no matter what you do. Some go completely off the deep end with anti-cancer lifestyles, waste much of their life preoccupied with it, and still end up with it in one form or another. That's part of the trouble..."cancer" isn't one disease process, it's many. Those who expound on this or that miracle preventative and lecture patients about how poor their past decisions might have been are insufferable and do no one any favors IMHO.
OP, you are doing exactly what you should be doing...gathering information, educating yourself, considering not only the medical choices but the personal ones. It is overwhelming right now but you will start to "feel" what may be right or wrong for YOU. There is such a thing as too much research; second guessing everything, to the point of analysis paralysis. At some point you'll probably feel enough's enough. Nothing wrong with that. Don't let others guilt you into agonizing, endless speculation. All that will do is increase your anxiety...just what you don't need. There are lots of voices in your ear right now...don't forget to listen to the one you were born with. I am rooting for you and wish you the best!
Last edited by Parnassia; 08-02-2019 at 01:23 PM..
So, it basically means that it is a higher grade, more aggressive cancer?
I have to say, this all feels surreal. At times I feel like I might be having some symptoms, but am not sure. At other times (like now) I feel 100% normal. I do not doubt the pathology report and yet there are times I think: “How can I be so sick, yet feel so well?”
I have also learned the chilling fact that often people with stage 4 lung cancer (and other stage 4 cancers as well) can be almost completely asymptomatic, at least at first.
That's basically beyond my pay grade. I would suggest calling your doctor and asking for clarification.
It happens unfortunately. Many are taken completely off guard when they get a cancer diagnosis. Been there done that twice now. It rocks your confidence in this tissue house you've been so blithely inhabiting. We forget that the body is incredibly complex but also incredibly tough. Things can go wrong often without any obvious risk factor. There are negative legacies hiding in our DNA we may never realize and there are accidents simply because we are imperfect living organisms exposed to the world.
Other people also love to blame the victim, assuming they only ended up with a cancer diagnosis because they abused themselves (diet, smoking, alcohol, lifestyle). Just not true in many cases. Taking care of yourself obviously can reduce your chances but there isn't any guarantee you'll remain cancer-free no matter what you do. Some go completely off the deep end with anti-cancer lifestyles, waste much of their life preoccupied with it, and still end up with it in one form or another. That's part of the trouble..."cancer" isn't one disease process, it's many. Those who expound on this or that miracle preventative and lecture patients about how poor their past decisions might have been are insufferable and do no one any favors IMHO.
OP, you are doing exactly what you should be doing...gathering information, educating yourself, considering not only the medical choices but the personal ones. It is overwhelming right now but you will start to "feel" what may be right or wrong for YOU. There is such a thing as too much research; second guessing everything, to the point of analysis paralysis. At some point you'll probably feel enough's enough. Nothing wrong with that. Don't let others guilt you into agonizing, endless speculation. All that will do is increase your anxiety...just what you don't need. There are lots of voices in your ear right now...don't forget to listen to the one you were born with. I am rooting for you and wish you the best!
Thanks for this terrific post!
For whatever reason, the drive to research my condition has almost completely disappeared for the moment. I feel like I really do need to see a specialist before I can start researching in a productive manner. I wasted so much time researching lymphoma and it wasn’t even that. I started looking into possible treatments, then thought I have no idea if any particular treatment is even going to be an option for me in my particular condition. I mean we don’t even know if I have throat cancer, esophageal cancer or lung cancer yet. Or whether or not the primary tumor will ever be found.
For whatever reason, the drive to research my condition has almost completely disappeared for the moment. I feel like I really do need to see a specialist before I can start researching in a productive manner. I wasted so much time researching lymphoma and it wasn’t even that. I started looking into possible treatments, then thought I have no idea if any particular treatment is even going to be an option for me in my particular condition. I mean we don’t even know if I have throat cancer, esophageal cancer or lung cancer yet. Or whether or not the primary tumor will ever be found.
That's how I was both with my daughter when she had melanoma, and my husband when he had first a neuroendocrine tumor and now leukemia. I know enough; I'm a nurse and I haven't totally given up, but I don't have a desire to direct his care. Some of my friends do, though. They drive me nuts!
have no idea if any particular treatment is even going to be an option for me in my particular condition. I mean we don’t even know if I have throat cancer, esophageal cancer or lung cancer yet. Or whether or not the primary tumor will ever be found.
You will find out more when you get to Moffit. When is your appointment there? Being at a major cancer center will enable you to find the correct diagnosis before a treatment is determined.
For whatever reason, the drive to research my condition has almost completely disappeared for the moment. I feel like I really do need to see a specialist before I can start researching in a productive manner. I wasted so much time researching lymphoma and it wasn’t even that. I started looking into possible treatments, then thought I have no idea if any particular treatment is even going to be an option for me in my particular condition. I mean we don’t even know if I have throat cancer, esophageal cancer or lung cancer yet. Or whether or not the primary tumor will ever be found.
Jill, I experienced the same overwhelming emotional roller coaster. You will not know much until you have the PET scan and your doctors can develop your treatment protocol.
The stage, grade and primary origin will determine your treatment. When that is discovered get a second opinion (if you feel you need it).
Once you have the treatment plan, take that on with a vengence and the determination that the illness will not win.
You have a bunch of folks rooting for you!!!!!
For whatever reason, the drive to research my condition has almost completely disappeared for the moment. I feel like I really do need to see a specialist before I can start researching in a productive manner. I wasted so much time researching lymphoma and it wasn’t even that. I started looking into possible treatments, then thought I have no idea if any particular treatment is even going to be an option for me in my particular condition. I mean we don’t even know if I have throat cancer, esophageal cancer or lung cancer yet. Or whether or not the primary tumor will ever be found.
Understandable. That sponge in your head is saturated. Too much trying to get absorbed too fast. Things need to settle out for a while before more can be soaked up and processed. You don't have your real diagnosis, but you are arranging to get it. Let those plans jell. You haven't made a fatal error, you proceeded down one path and found it wasn't the right one. You have time to change course. Once you get more specific information the picture will get clearer and you can face those necessary choices. I know it feels like everything is now an emergency...must be done immediately, and nothing can wait. Well, that's probably not really true. I know, I know how hard it is to wait...but there's only so much you can do right at this second. You will probably also reach a point with a new MD when you realize you can trust them to make some of the more minute decisions on your behalf instead of wrestling with every single detail. Control can only accomplish so much. Your mind is telling you it needs a breather. Arranging your visits to specialists to pin down the right diagnosis can be that breather.
Last edited by Parnassia; 08-03-2019 at 12:49 AM..
Your Dr is doing all the right things. I would go to one of the larger centers (like the 2 mentioned here) as they are likely tied into experimental trials that NIH and other places might be funding/doing. You may qualify for some of those trials. Do everything that you feel you need to do as far as treatment is concerned. That way you wont have regrets that you might have left a stone unturned. You are on the right path already.
FWIW, although going to a nationally-recognized center is a good idea in general, there's no need to go to one simply to find out if they are involved in any trials. NIH maintains an online database of world-wide trials and you can conduct a search online to see if there are any nearby and/or accepting new volunteers. Here's the link: https://clinicaltrials.gov/
Quote:
Originally Posted by Jill_Schramm
For whatever reason, the drive to research my condition has almost completely disappeared for the moment. I feel like I really do need to see a specialist before I can start researching in a productive manner. I wasted so much time researching lymphoma and it wasn’t even that. I started looking into possible treatments, then thought I have no idea if any particular treatment is even going to be an option for me in my particular condition. I mean we don’t even know if I have throat cancer, esophageal cancer or lung cancer yet. Or whether or not the primary tumor will ever be found.
My thoughts and prayers are with you, Jill. I think at the very least that you need to find a new oncologist. You need to have faith in your doctors, and even more importantly, trust. Moreover, that trust goes both ways and your oncologist has already demonstrated that he doesn't trust you. I don't think that I could continue to see a doctor who thought I was a liar.
I realize that you don't have lymphoma, but I wanted to let you know that two years ago I was diagnosed with stage 4 mediastinum cancer with a large tumor in my chest cavity squeezing my heart and trachea making it difficult to breathe, as well as smaller tumors in three of the four cavities of my heart. I also had some sort of issue in my lungs causing a constant cough for months. My oncologist, cardiologist and pulmonologist would routinely get together to discuss my case and treatment. I was recently informed by my PCP that none of the doctors at that time thought I was going to survive. But now, all the tumors are gone and I'm in remission. So never give up hope and keep fighting!
Jill until right now I have not been paying any attention to your story and how it is unfolding. All I can say, is keep a positive attitude which I know is not always easy; remember all cancers are easier to treat today than every before and keep us posted. You are in my prayers.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
