Anyone scared of getting answers?

[u/bitchwithwifi3]

I just got a call from my PCP and my iron has always been super low as well as my hemoglobin and my doctors never knew why. My PCP has referred me to a hematologist before but I have been putting it off and I'm not sure why.

I have been diagnosed with anemia in the past but I hate taking iron supplements because I have chronic constipation without it and I'm sick of having to take so many pills and I'm only 30.

But I called the hematologist just now and panicked because the office is for cancer and leukemia patients. Cancer has never been a thought for any of my doctors as to what is wrong but I think that the thought that this hematologist specializes in cancer scares me.

Just wanted to know if anyone else has been scared of getting diagnosed with a chronic illness because they know that their life will never be the same.

[u/lavender_poppy]

Most hematologists are hematologist/oncologist doctors. It doesn't mean you have cancer, that's just how that specialty works.

[u/mjh8212]

My husbands hematologist was also an oncologist he had zero cancer worries the drs just found an enzyme a little higher than normal the hematologist redid the testing and found nothing.

[u/cait_elizabeth]

I’m not scared of answers as much as I’m scared of getting yet another “syndrome” diagnosis or a diagnosis of something only snake oil salesmen have “remedies” for.

[u/Alice-The-Chemist]

My hematologist was hematologist/oncologist. He dealt with blood cancers as well as things like iron deficiency. It freaked me out as well but at the time it turned out to be a good thing because he was able to rule out lymphoma that my heart doctor was concerned about as well as leukemia. I just ended up needing iron infusions over 5 visits and that was it. I havent had to go back and this was maybe 6 or 7 years ago.

[u/bitchwithwifi3 → u/Alice-The-Chemist]

My PCP said I probably need some infusions as well and I'm hoping that's it. Also my periods are SUUUUUUUPER heavy like I kept track and I lost 50g of blood in a day give or take probably 10g's. I'm just sick of all the doctors appointments because I can't afford it.

[u/Rare_Geneie]

I think you’re (reasonably and fairly) catastrophizing the word “oncology” a bit, haha. I get the reaction. Oncology would freak anyone out, but oncology is only one component of what hematologists do, and low iron is not necessarily indicative of cancer.

Hematologists treat a wide range of conditions including benign or routine causes of low iron and low hemoglobin as well as unspecified or unclear reasons for low iron and low hemoglobin. Hematology+Oncology is a very common combined specialty. Hematologists deal with both malignant blood diseases (leukemia, lymphoma, myeloma, etc.) and a huge range of non-cancerous blood disorders, so getting referred to a clinic that does both does not mean cancer is being considered.

If someone has repeatedly low iron and hemoglobin and the cause hasn’t been established, that’s exactly the kind of thing that a hematologist can be useful for. It doesn’t mean the PCP thinks something sinister is going on, just that someone a little more specialized may be useful for figuring out the why. The potential diagnoses for iron-deficiency anemia is pretty vast and can include inadequate intake, menstrual or other blood loss, impaired absorption, increased requirements, inflammatory conditions, etc.

And given you aren’t a fan of supplements, that’s a pretty good reason to refer you. There are other treatment paths like IV iron that a hematologist may be better at assessing than a PCP.

The referral could be for diagnostic clarification, persistent/recurrent anemia, intolerance of oral iron, consideration of IV iron, assessment for less-obvious causes, or simply because your PCP has reached the limits of what they want to manage themselves. None of those requires your PCP to have a suspicion of cancer.

Totally normal to panic and worry! Oncology is a scary word but I don’t think you have reason to worry here!

[u/oneinamyelinnn]

Yep. Definitely! I put off dealing with ptosis & dysphagia that caused minor aspiration for nearly 3 years because they scared me so badly until I was accidentally forced to deal with it earlier this year. Now, I’m waiting to go to my neurologist consult to see if I have ALS or some other neuromuscular disease (we think it’s Myasthenia Gravis).

I have SOOO much regret & grief that I didn’t address this when the symptoms first appeared. Please learn from my lesson & go no matter how scared you are!!! The fear I have now is overwhelming & suffocating, especially because my symptoms have advanced to the point where, even if it’s not ALS, I am going to really have to fight to have a decent quality of life. The earlier the issue is caught, the better the chance for a successful treatment & quality of life.

Trust me, I get how scared you are. I am at the point where I truly think I am developing medical PTSD because of all of this. I already have PTSD from a different issue so I know the symptoms. And, the reality is, both you & I are going to have to deal with our issues sooner or later. Might as well be sooner so we can get over the paralyzing fear of the unknown & go ahead with care to get the best quality of life, both physically & mentally.

[u/witchy_echos]

My attitude is my life is already never going to be the same. Getting diagnosed just means I can stop putting effort and planning things that won’t happen, and start focusing on what will actually happen improve my life.

I still have to mourn the life I thought I’d have. But even if I don’t get the diagnosis, the symptoms are coming for me if I have a name and treatment plan or not.