2 time cancer survivor!

virgoian84
virgoian84 Member Posts: 6 Member

HELLO EVERYONE!!! I’m so happy I found this site and am excited to share my story and get others opinions!

so this all started about 10 years ago, my OB/GYN felt my neck and discovered numerous lumps on my thyroid after scans and biopsies. I was found to have papillary thyroid carcinoma. When they remove my thyroid, they found that it had spread to the lymph nodes, as well as the muscle in my neck. I went through radiation after my thyroidectomy and went into remission. I had a small recurrence after a PET scan did another round of radiation and another scan and was told I was clear. And the doctors haven’t really followed up on me since.

Let’s fast forward to today 10 years later. I work two jobs and have been taken out of work because my blood pressure has been steady about 180/150. I have no energy night sweats, abdominal pain, chest pain, upper back pain lymph nodes in my neck and under my right arm I’ve also been discovered to have a predunculated polyp 5 mm that was removed. I’m still waiting on biopsy results a month later. I also had a mammogram done and a sonogram on my right breast. They found three lobulated masses in my right breast and was told we need to wait and see and recheck in six months at this point I can’t work. I’m so sick running a low-grade fever on and off my anemia is severe. I have fatty liver, high RDW, low iron, low hemoglobin, low MCV, low MCH, High TSH, high lipase and my whole world is crashing down around me at least it feels as such I don’t know how much longer I’m going to be able to keep my home And I can’t even worry about that right now with how terrible I’ve been feeling and yet the doctors aren’t doing anything….

Comments

  • virgoian84
    virgoian84 Member Posts: 6 Member

    I just thought I’d post a little update for anyone who’s reading… my results came back from my colonoscopy, thank goodness all benign! But sadly didn’t have good news at my cardiologist today. They did an EKG and an ultrasound on my neck to take a look at blood flow, they found some nodules and masses in my neck again and in the thyroid bed so now it is or hopefully they will do more and the cardiologist is recommending a scan and potential biopsy of the area….

  • Arx001
    Arx001 Member Posts: 36 Member

    Hi, I know little about thyroid cancer (I believe it is the least fatal cancer) but thyroid problems can also be tough.

    Two questions:

    • How come they don’t track your health? Did you quit your oncologist? There are established procedures, for example I will have multiple number of three monthly tests and then six month and then one year visits etc.
    • Why don’t they recommend a PET-CT scan after the ultrasound just to see it all?
  • virgoian84
    virgoian84 Member Posts: 6 Member
    edited January 18 #4

    hello, pleasure to speak with you! I was diagnosed with Papillary thyroid carcinoma when I was 29 roughly 11 years ago After about four or five years of following me, my endocrinologist basically told me there’s nothing more that they can really do. Nothing is changing. Come back if there’s any problems in the future and they had my primary doctor following me to refill my Synthroid make sure I’m doing OK. Thank goodness when I went to the cardiologist and they checked the blood flow in my neck just the other day and they found these nodes and masses and at least he is recommending that when I see my endocrinologist on the 27th to do a PET scan possible biopsy all he can do is make a recommendation as he said. It’s so crappy I tell you, lol my neck wasn’t even really bothering me that bad until he put that ultrasound machine on my neck. Now there’s a spot in there that just is so irritated. It’s uncomfortable and annoying when I swallow. I was able to pull up an old scan of mine even after thyroidectomy I still had masses in my neck, a couple of them over a centimeter I guess in this instance they felt those were fine to be there.

  • virgoian84
    virgoian84 Member Posts: 6 Member
    edited January 18 #5

    I think it’s just a sad common place with the primary doctors in my area. I’ve had a few of them because I didn’t like the care I was receiving even the one I have currently does yearly physicals but never even touches me except to take my blood pressure or oxygen, doesn’t look in my ears, nose, throat mouth or palpate abdomen or throat none of the normal stuff that I’m used to. Even though all the paperwork always states that they’ve done it all and that the patient is in a pleasant mood looks fine, etc….

  • virgoian84
    virgoian84 Member Posts: 6 Member

    Happy to chat with you! Yes, most definitely to my knowledge the least fatal cancer. I was diagnosed when I was 29 about 11 years ago after about four years of following me they said there wasn’t anything else that needed to be done except for follow ups with my primary to keep a check on my thyroid levels And make sure my Synthroid is refilled other than that they’ve never really done any follow ups with me, they haven’t even tested my thyroglobulin in almost 5 years hopefully on the 27th when I see the endocrinologist they’ll be able to do all of that my primary doctor For a of the time just felt that I was “menopausal with severe indigestion”. Also thank goodness when the cardiologist looked for my blood flow in my neck, he’s the one who’s recommending to my endocrinologist coming up on the 27th to do a PET scan and possibly a biopsy. It just seems to be a big waiting game and jumping from specialist to specialist until someone that rubs them just the wrong way with my health. I’ve had multiple primary doctors because they all seem to be very vague and don’t understand that they’re taking care of a patient that has had previous current primary that I have doesn’t even do physicals I go in once a year to see him, but he doesn’t look in my throat, my nose, my ears I’ll feel my neck doesn’t palpate abdominal. The only thing they ever do is blood pressure oxygen and then they fill out a giant list on a piece of paper of all these things that they checked and felt were normal, even though they never even touched me. In the area where I live it’s just a common place that doctors are like this.

  • Arx001
    Arx001 Member Posts: 36 Member

    Sorry to hear these doctors’ lack of care Virgoian84.

    My geneticist old me about a friend’s case in Western Europe where the GP refused - for one year - to refer his patient with cancer symptoms to an oncologist so problems often happen but hopefully they don’t hurt someone.

    Since you are doing fine perhaps you just travel a bit farther once or twice per year and see an oncologist? Even if you are doing fine and we all hope there is nothing worrisome, it's a good practice to get screened. With the help of internet and reviews it’s easy to find a good GP and an oncologist.

    I believe (but I am not sure what the practice is and it may change) every cancer patient should see their oncologist once per year even after full remission. This nasty disease sometimes tries to come back and hopefully this wouldn’t be the situation.

  • Miles' mom
    Miles' mom Member Posts: 48 Member

    least fatal cancer, perhaps…but one that likes to jump around. I second everything Arx001 said. Mine was a 3 year, 3 surgery deal with all the stuff. I still had an ultrasound and bloodwork every 3- 6 mos then once a year for multiple years and end of March is my 1st one in 2 years, since the previous have been clear. I expect this one to be also.

    Blessings to all!! This is a good spot to get answers, hope, comfort and courage :) It's a club you would choose not to be in, but glad that you have.

  • virgoian84
    virgoian84 Member Posts: 6 Member
    edited February 2 #9

    Hello everyone!

    I didn’t want to leave anyone hanging on what’s going on so here I am with an update. since they messed around with my neck it now feels like I have a potato in my throat that is difficult to swallow and my voice has gotten harsh. I’m also getting random nose and ear bleeds. Very strange. I did get my blood work back. Finally they’re definitely is some concern with my thyroglobulin level it should be close to undetectable, but is sitting at .8 up from .2 with a recommendation for follow up. Coming up on Tuesday I go for an ultrasound and hopefully we can go further from there.