I would call your oncologist. It is possible the breathing and fatigue are unrelated to your cancer and he/she may refer you to a pulmonologist.
Clear Cell, Kidney Cancer Questions
How do you talk about worsening symptoms?
Asked by rocketman on Wednesday, February 22, 2012
How do you talk about worsening symptoms?
I feel like it is harder to breathe and I tire more easily. My wife has noticed and is concerned that things are getting worse. She said "Don't lie to protect me." We are scheduled for a follow-up CT and oncologist appointment March 20th.
I am thinking about going to see the oncologist sooner. However, I do not want to worry my wife unnecessarily. So, I am thinking about going to the appointment by myself. Does anyone have advice on what I should do?
11 Answers from the Community
Definitetly call and make an earlier apt. some things need to be caugtht before they get worse. I found that lots of the things I thought were worsening symptoms turned out to be something less. My apt. yesterday, I have a sore spot in my upper neck, right under my jaw, I thought the worst, another lymph node swelling. turns out it was a saliva gland trying to work, and come back to life.
Make the apt, and take your wife, she wants to know just as much as you do. I have been where you are, didn't want to tell her, tried to keep it from her. Just tell her everything. I hope everything is well with you, good luck in your upcoming apt.
similar to you, i often pose and think should I contact now or wait and see...
If you are keep thinking about it, yes, pick-up a phone now and make an appt or at least, let your Onc know what's happening. If you think it is minor, talk to the office nurse and have her/him call back.
hope this helps....
BREATHING ISSUES? Definitely call. Could be something super simple like a cold... or something that needs addressing asap. When it comes to breathing, I don't think waiting a month is a good idea. I think calling asap is the right way to go.
Ask your wife what she wants. Sounds like she wants your honesty... Does your cancer center have any counseling services? Such services might help you navigate some of this tough questions. Also, they might be able to meet with both you and your wife so that you can both figure out how much to say.. when to say it... and so on....
I'm so sorry that you are having these issues.
Please call soon!!! Please...take care of yourself.
And as the wife of a patient (for 2 1/2 years), I want to know every single thing he feels...it is how he takes care of himself, so I can then take care of him. Every day I ask him how he feels (often several times a day) and it took a while for him to know that I want to know, so we can address the good and not so good together. Most often, if he felt lousy, it was as simple as him not drinking enough, forgetting an over the counter me (Tylenol), or simply over doing it. I know how frustrating it can be to feel you have to call the doctor, but that's their job.
Please always know that you are never alone in this journey...and sending positive thoughts
My approach is that this is a family disease. When diagnosed with pancreatic cancer (treatable, not curable, 3 to 9 months usually) I had 1/2 hour to think about it before my wife came home from work. I decided to open my care to her completely. I told her I considered her an integral part of my treatment, welcomed her to all Doc visits, asked her to take notes, ask questions, fully participate. Four & a half months later I have never regretted it. I think to her, uncertainty would be much worse than knowing and if I tried to hide something she would assume it was bad news, making it even worse. My kids are grown (youngest at university) but they also participate, go with me to Doc visits if they are home, stay in constant touch, etc. Family is the first and most vital part of a cancer patients support team.
As for change in symptoms, contact your Oncologist immediately. You pay them to give you good advice on treatments, they can't do that if they don't know. After 14 very successful chemo treatments I started seeing some issues, including such as you mention, returning. I texted the Oncologist after about 3 days - gave myself enough time to be sure what I was feeling was consistent. Again, use that support team. The Doc can't help if they don't know.
If things take a change I usually call my oncologist and in to see her either that day or the next don't wait around doesn't do good for the body or the mind. I choose to go to my Dr appts alone unless I know something real important needs to be discussed where I need another brain. This is a family effort but in the end what I do is up to me. I won't lie to my family but I like to know first. Selfish maybe but to me it is still control!
Have a happy tomorrow. Go to the Drs.
I would definitely get an appointment with your oncologist as soon as possible. That was how they discovered my cancer had came back and metastasized this time. I was supposed to have a regular checkup in mid-January, but I'd started experiencing worsening symptoms before than and just knew something was wrong, so I came in earlier to see what was going on.
I know it's hard to do this when you have loved ones you want to protect; I'm the exact same way because I know it's putting so much stress on them. But when it comes down to it you have to put yourself first at times like these. You don't want things to get worse than they already are.
Definitely, I'd move up the appointment and level with your wife. It's always good to have another person at your appointments to help you ask questions, make notes, remember things to tell the doctor and things the doctor says, etc.
You don't mention whether you are on treatment. Some treatments have a known side effect of pneumonitis that can cause breathing symptoms and tiredness. This particular drug-caused problem cannot be gotten rid of with antibiotics and almost always requires steroids. I don't know whether it applies to you, but many doctors don't know about this potential side effect.
And as others have said, the problems may not be related to the cancer at all. Good luck!