Anyone here have Polycythemia?
I got this diagnosis yesterday and would like to hear from anyone who has also been diagnosed with this condition. I’m at a loss as to what happens next. I heard the doctor but now I need down to earth answers.
Sorry to learn of your diagnosis and understand this can be a stressful time.
I was diagnosed with blood cancer in 2020 and underwent 6 months of chemo for Stage 2 NHL. So far all is OK. While not diagnosed with polycythemia I have found a common thread with blood cancer and others is --- we are all different in how we are impacted by blood cancer and how treatments will impact us.
Hopefully someone with a similar diagnosis will respond in the next few days. In the meantime just be mindful that a lot of the information you are potentially researching and finding on the internet may not apply to your particular situation.
While temping ... try not to get swept up by Dr Google. Just be sure to keep your MD's well informed of any changes and ask loads of questions. I found it helpful to have my questions written down prior to a visit and also it is very helpful to have someone with you taking notes if possible. If you are not sure of what you heard ask again . Do not be bashful. You may also find that the nurses in the office can be extremely helpful and can answer or get answers to your questions.
None of this is easy and yet at the same time it is amazing how we all get through this a day at a time. This site is great place for good information. Know you have support here. Take care... This is a journey and it just takes time for things to evolve . Dennis(Blood-Cancer.com TEAM)
The time when you are first diagnosed is an overwhelming and scary time. People are throwing all kinds of information at you and asking you to make decisions about your future in seconds and you usually just go along with whatever the doctor says because you don't know better. It's totally natural to feel those things plus confusion. Ask anything you want and we will do our best to help out, but when it comes right down to it it's best to try to take in some info from reputable places that might help you decide what's best for you! You are not alone. Keep on keepin' on, DPM 
@Ariadne619 Do you have a social worker or is there a nurse practitioner or other nurse who is on your team? I found that although my doctors have been wonderful, I have felt most comfortable asking the nurses questions. They seem to be more accessible, and I have believed them when they say no question is too silly. I agree with the others that although totally understandable and tempting, it is best not to seek answers on the internet. You are just as likely to find something that will freak you out as you are to find something that will give you clarity. One way to do it is to ask your doctor, nurse or social worker to find a study or explanation that could be helpful and have them send it to you. We've all been there and totally understand what you are going through and wish you the best. -- Ronni (blood-cancer.com team member)
While the natural tendency is to focus on the MDs treating us I have found that the oncology nurses are some of the best sources of information. Broadly speaking MD's tend to focus on treating you. The nurses tend to be a bit connected with patient emotions and the human side of cancer. Agree with Ronni on not seeking Information on the internet. Here is a pretty good place to find some guidance and by all means ask as many questions of your medical team until you are satisfied and comfortable with the information you are receiving. All of this is scary in the beginning - just take it one day at a time. Dennis(Blood-Cancer.com TEAM)
I know this is a trying time especially now that you have the name and confirmed diagnosis. First I would say close your eyes, breathe and begin...
take a notebook with you and ask as many questions that come to mind and have your doctor and or oncology nurse help with processing this trying news. There may be questions that aren't answered in full clarity, but ask them again and allow the team to clarify whatever is still questionable.
Wishing you the very best, and our network here is here wishing you the best in the next stages.
Here is a past article that may be helpful as well.
https://blood-cancer.com/living/5-things-mpn
You got this!Ariadne619
While the natural tendency is to focus on the MDs treating us I have found that the oncology nurses are some of the best sources of information. Broadly speaking MD's tend to focus on treating you. The nurses tend to be a bit connected with patient emotions and the human side of cancer. Agree with Ronni on not seeking Information on the internet. Here is a pretty good place to find some guidance and by all means ask as many questions of your medical team until you are satisfied and comfortable with the information you are receiving. All of this is scary in the beginning - just take it one day at a time. Dennis(Blood-Cancer.com TEAM)
