So scared and new to this board

[MochaMommy23]

I’m scared. Petechiae (tiny) all over stomach and legs. Slight elevated HCT (44.7) and RBC are high normal. Been referred to hematology and oncology for further workup in two weeks! My stomach also feels swollen and tender. Does it sound like I have cancer? I’m so scared

[clubdino]

Hello. Petechiae is usually a symptom of a low platelet count. Petechiae can be a symptom of cancer but it can also be a symptom of other things that aren't cancer related. I know it will be a long 2 weeks for you. Hang in there and try to surround yourself with family and friends in the meantime to help keep your mind off things. Best wishes.

[MochaMommy23 in reply to clubdino]

Thank you so much. You are the only one who has answered me so far and I’m so scared. I think it is the COMBINATION of the petechiae and the HCT (high) and red blood cells (high end of normal)

[clubdino]

Please don't take it personal as most of the members on this forum struggle with too many platelets versus not enough platelets with the exception of a few. Out of curiosity do you know what your platelet count is? And your white blood cell count?

[MochaMommy23 in reply to clubdino]

Platelets are 191 (my labs normal is 150-450) and WBC is 6.95 (normal range is 3.50-10.80)

[clubdino in reply to MochaMommy23]

Honestly your bloodwork results aren't very concerning for a myeloproliferative neoplasm. The fact that you have petechiae with a normal platelet count seems to point in another direction. It may not be petechiae at all. I once got petechiae from an adverse reaction to an antibiotic. Usually PV is diagnosed from a much higher HCT than yours.

[MochaMommy23 in reply to clubdino]

Thank you so much for talking to me. I wonder what else they could be. Little pinpoint red or purple dots under the skin. Probably 200 of them all over me scattered. When I googled PCV it simply said “elevated RBC and/or HCT. It makes me feel better that you don’t think this is that elevated. I have anxiety so this isn’t helping me worrying about this but maybe I shouldn’t have googled🙄😳

[clubdino in reply to MochaMommy23]

No problem. Dr Google will scare the hell out of anybody. I have little red dots on my upper thighs that have been there forever but I don't know what they are. I know they're not petechiae bc I've seen real petechiae many times after working in the veterinary field. And petechiae of the legs usually starts around the ankles. A high hematocrit can come from something as simple as dehydration.

[MochaMommy23 in reply to clubdino]

I wonder too if the doctor that saw all of them and told me it was petechiae knew what she was talking about (she is a physicians assistant and not an MD) and maybe with the slight elevation in RBC and MCT she thought of the worst. Yeah, I will try not to worry as much. So do ppl who have PCV have much higher levels than me?

[clubdino in reply to MochaMommy23]

Well, polycythemia can be diagnosed with a number that is barely out of range. But there are two types of polycythemia. There is Polycythemia Vera otherwise known as PV. And then there is secondary polycythemia. Secondary polycythemia can be caused by smoking, living at a high altitude, sleep apnea and/or obesity among other things. Secondary polycythemia is reversible if you take away the aggravating factor. Polycythemia Vera is cancer of the bone marrow. So even if you have polycythemia it doesn't necessarily mean you have cancer. I hope that makes sense.

[MochaMommy23 in reply to clubdino]

Do you find that most ppl who have either one of those have more than one type of elevated cell? In other words, my platelets and WBC are within normal limits. Would most ppl present with more than just a high end normal RBC and elevated HCT? Thanks for all your help 💖

[clubdino in reply to MochaMommy23]

Yes, often times people that are diagnosed with PV also have a high platelet count and/or white blood cell count (but not always.) Having a high hematocrit and RBC count go hand in hand. Your hematocrit is just the measurement of what percentage of your blood contains red blood cells. For instance a hematocrit of 44 means 44% of your blood contains red blood cells.

[MochaMommy23 in reply to clubdino]

So I’m curious then how a high end RBC count that’s the very highest normal it can be can push the HCT out to an out of normal limit? Does this sound like dehydration numbers to you? I also have a sore tummy left side rib cage and a feeling of fullness after I eat so there are signs there...I just don’t know. But if it is that, is it a shorter life span?

[clubdino in reply to MochaMommy23]

Under the left side of the ribs resides the spleen. If the spleen is enlarged (splenomegaly) it can cause you to feel full. Usually if somebody has splenomegaly due to a myeloproliferative neoplasm their bloodwork would reflect it. And your bloodwork doesn't look bad at all. And yes a high end normal RBC count can cause your HCT to go slightly out of range. But be careful at looking too much into things (symptoms) because I have been guilty of doing that and I drove myself crazy only to find out in the end that it was nothing all along. Your PA may be trying to be extra cautious.

[MochaMommy23 in reply to clubdino]

Thank you so much. I needed someone to talk me down from the ledge 💖

[clubdino in reply to MochaMommy23]

You're welcome. I hope all goes well at your doctor's appointment and I would be interested to know what you find out. ❤

[Ebot]

If it’s any consolation the ‘magic number’ for intervention for someone with confirmed PV is usually an HCT count of 45 plus. Many innocuous things can cause a slightly elevated HCT count and 44.7 is pretty much within normal range. Certainly it’s not a number to excite clinicians outside the MPN community (my GP would consider that ‘normal’). Steer clear of Dr Google! Good luck.

[Joybard]

Ehugs sent. Thinking of you. Try to keep busy and not dwell on it, as clubdino has said. Your blood counts are only slightly out of normal range. I would avoid taking any medication containing aspirin due to the Petechia until you have seen your Doctor. Hope all goes well.

[MochaMommy23 in reply to Joybard]

Thanks so much . Blessings to you!

[bmboulanger]

It took me a long time to come to terms with my diagnosis of essential thrombocythemia (ET) and the underlying symptoms of polycthemia vera (PV). Even though my symptoms have been around for many, many years, I just attributed them to menopause, aging and living at a high elevation.

Now, nearly a year and a half later, my blood counts are fairly stable and are being managed with hydroxyurea, 500 mg per day, phlebotomy (venesection) about every 3 months and a daily aspirin.

Once you get set up on a treatment plan, and they check to make sure that your spleen is fine, you will hopefully be able to calm your fears and anxiety and learn to live with this disease if it is in fact what you have.

My hematologist has said to me so many times, "This is a serious but manageable disease. Take good care of yourself, pay close attention to your diet, lower your stress, get lots of rest, exercise regularly, keep a positive outlook, and enjoy your life! It was the best advice she has given me over this long, scary ride.

I predict you'll be fine! Dr. Google can scare the hell out of you all while giving you valuable information. Wait to hear what your doctor says. If you're not happy with that outcome, or don't feel comfortable with that doctor, please get a second opinion! Not all hematologists are familiar with myeloproliferative neoplasms. They go to a book and get a little bit of information and treat you that way. Try to find an expert!

You're definitely not in this alone. And though these are rare disorders, and the sound of the term 'blood cancer' can be devastatingly frightening, It is manageable, and you can have a normal life.

The best of luck to you!

[wotan10]

Hi, welcome to this safe site.

You are not alone in this situation.

We have all been where you are now.

You can access this site any time

Just remember that your team will be finding out what needs to be done.

Keep safe, take care Annemarie Lewis Fleetwood England.

[Sarah_786]

As far as I can tell, your HCT is actually in a normal range- where I live, you have to have a HCT over 0.48 for at least a couple of months before getting referred to a haematologist. Simply being dehydrated can cause a significant increase in red blood cell count too. Not sure about the petechiae- hopefully it is something easily resolved. Good luck for the appointments, and try not to Google anything- easier said than done!

[rkhabtec]

Welcome glad you are here on this forum. I also am new only been here for a year but am glad of the information from these kind folks. I wish you well.

[Kimmyk]

Ask about jak2 test. I had similar symptoms and it could be polycythemia. Blood test should help with answers.

[azaelea]

I welcome you to this site too. I'm also fairly new as I was diagnosed with ET last May. I know how you feel and sympathise . YOur bloods appear to be normal so hopefully it will not be ET or PV. Will look for your post on here when you have your results. Best of luck. Fran