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What cancer patients, their families, and caregivers need to know about COVID-19.

Hello everyone!

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hello everyone!

Hope everyone is doing good (health wise). I apologize for not checking in sooner but since a lot of things changed for me including oncologist, I didn't want to post until I had news to report. I have a couple of questions that I'm wondering about and hopefully you guys can help me out! First the results that I got from my PET scan that I got today where so so...there was an abnormal finding on it, I'm just going to post what it says and see if you guys can help me understand it more. Physiologic uptake: there may be expected metabolic uptake within the brain, tongue and floor of the mouth and larynx/vocal cords, heart, hila...

my new onc wants me to go to an ENT to check these things out, my question is what does an ENT going to do or what can he do that my onc can't? I guess I don't understand...sorry if I didn't explain it right :/

sending HUGE HUGS to everyone here and missed everyone of you! Take care

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Liz!  I haven't posted much in awhile myself. 

Regarding your question, the wording is kind of strange "there may be expected metabolic uptake...". 

I'll refer you to this:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195840/ .

My guess is the ENT has more specialized training for those areas.

Please keep us posted on how it's going and what you find out. 

Big hugs back and I like your new pic.

Jim

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Jim,

So happy to hear from you! I hope you're doing good, thank you for your reply. The more I read my Pet scan results the more nervous I get lol...there's this other part that I didn't add because I didn't read it until later. It basically says that Its possible that it may be lymphoma or carcinoma in the avid nasopharyngial and tonsil (right tonsil) more than the left. I know it's hard to know what it is until I go to the ENT and wait for the test to begin :/ 

ugh :/ 

well anyways, thank you and sending you a huge hug buddy! 

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Liz.  The article I referenced discussed the high incidence of false positives on pet scans alone in those areas (head/neck).  I imagine once you see the ENT, there will be different tests (like MRI, CT, etc.) to get a clearer picture of what's going on.  It may be totally benign and I certainly pray that for you :). 

Try to keep the worry to a minimum and know we're here for you, Liz.

Hugs and hang in there,

Jim

illead's picture
illead
Posts: 852
Joined: Aug 2012

and wishing you didn't have to go through the anxiety.  I sure hope it isn't anything. 

My best to you,

Becky

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

I am so sorry you are having these problems and worries. Not sure why you have a new Oncologist, but I hope that is a good thing. I hope you trust and feel confident with your new Doctor.

Some of the jargon used on those medical reports seems so ominous and difficult to understand. 

Do you already have an appointment with an ENT? My Oncologist has referred me to several other specialists--a Pulmunogist, a Nephrologist, a Neurologist, and others to acquire information about me and my body. I am thankful he consults with other physicians about my care. 

I am praying for your peace of mind.

(((Hugs)))

Rocquie

 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hello ladies!

Thank you for your replies, I still don't have an appointment with an ENT, I first have to see my PCP so she can reffer me to one. It all has to do with insurance. I have a new onc not by choice again new insurance... new dr's. Changing dr's can be so hard, start new and explain everything again (like I can remember all that stuff) hahaha! My new onc seems like a very smart, funny doc which I think is a rare thing :) I've had two other Oncs and trust me they were not funny hehehe. I think I'm going to like this new one. I think that having new dr's is good, they can give you a different point of view, for example I would have never known there could be a problem with my throat because my old onc never gave me a PET scan only CT scans...hopefully it's all nothing and it was just a false positive :)

thank you Rocquie, Becky, Jim and everyone else that is letting me ramble on... Take care sending HUGE HUGS ^_^

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Just checking in to see how things are going and if you have learned anything yet :).

Hugs and positive thoughts,

Jim

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

I have been wondering about our Liz too.

Liz, thinking of you. . .

Hugs,

Rocquie

 

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hello everyone,

Sorry hadn't logged in, well I'm still waiting for my referrals...I did go see my pcp and she gave me some allergy pills because I had a cough that wasn't going away. I started taking them about a week ago and the cough is gone, but it still feels like they are slightly swollen. So hopefully it was just that :) 

As soon as I go see the ENT, I will keep you guys updated! Thank you so much for thinking of me...you guys are always in my prayers! (((HUGS)))

Sincerely,

Liz

Anonymous user (not verified)

Good luck! Nice to hear from you. Its been a while. Please don't be a stranger.

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi and thank you for your post..hope you're doing ok too. I'm trying to log in more often and read the post from our friends, I'll try as much as I can to post more. ^-^  (((Hugs)))

Take care

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Just wanted you to know I'm thinking of you.

Big hugs,

Jim

 

 

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Hi Liz,

I have been really absent from this forum for a while so I have not read up on all thats going on with you but I want you to know I am praying for you. My first sign of the non-hodgkins lymphoma was a lymph node under my jaw swelled up out of the blue. I was sent by my PCP to go to an ENT Specialist. He was the one who did a biopsy and a removal of that lymph node. I did two years of rituxin and was cancer free for about 2 years. Then I had a car accident and suffered a head injury. Ultimately...that head injury saved me because the MRI i received from my neurologist found something suspicious near my nasopharageal (sp) area.Then my oncologist did a PET Scan. Then I was referred back to my ENT Specialist who had his ENT Specialist Surgeon go in and perform the biopsy because it was in a very complicated area. I guess what I am saying is once you get Dr.s you like and trust they will work as a team.  

Keep us posted and just remember as I heard on this forum "until the biopsy" is performed nothing is for sure.

Hugs and prayers to you.

~GG~

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Jim & GG...
Thank you for thinking of me, I'm still waiting for the referral...I already called my PCP and reminded her of it... but I think I'm doing ok...
I don't want to worry about something that I don't even know I have...so for now I'm just going to enjoy life! I will worry about it later if I have to :)
I will keep you guys up to date as soon as I see the ENT and I get the results...meanwhile I will live life to the fullest!!!

(((((HUGE HUGS))))) to all of you! Happy Easter to those that celebrate it!

Sincerely,
Liz

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3379
Joined: May 2012

Sorry about the waiting Liz, and thanks for your kind comment to me at the other thread.

The reactive agent in PET scans (which can vary, depending on what areas are focused on) vary in response ("uptake"), even in many "normal" (non-cancerous) tissues throughout the body, or in tissue that is infected or healing from trauma or other injury. It sounds like that is all that the pathology report is referring to, but it is worth verifying, which is most likely what the ENT is slated to do.  I enjoyed the excellent link on the subjecct that Jim provided.

Easier said than done, but I would be pretty confident that no cancer is involved if I received the same report.

Will be praying for good news until everything is verified,

max

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Max

Thank you for your comment, I'm sure it's nothing...I think the machine got an uptake because I had a cold when I had the test done. The only thing that does worry me a little is that I get sick so easily. Does that happen to you, I don't know what to do..even when I'm not around sick people I get sick lol! I'm currently taking some Iron (super dose) that has vitamin C and some B vitamins too, because of an anemia that is really bad, I had to get a blood transfusion last year but thats another story anyway I thought that the vitamin C would help with my immune system but I haven't seen an improvement. Well if you know of something please let me know...take care (((Hugs)))

 

Sincerely,

Liz

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3379
Joined: May 2012

Liz,

About two years ago (three years after chemo ended) during my six-month blood work, I was severely anemic. My oncologist had me tested for several things, all negative (colonoscopy, celiac disease, etc).  He also had me do four infusions of iron at the clinic.  My iron went back to normal, and he has no explanation for what happened, but he told me to continue taking an over-the-counter iron supplement, and I do .

I take a daily Super-B vitiman supplement, and the B-12 portion gives me an energy boost.  "B" is water soluble, so you cannot take too much; "E" and some other supplements are "fat soluble," and can cause overdose, or too much accumulation in the body.   The only recommendation I can make is for a B-Complex, it works for me, and cannot do harm.  B vitimans can be gotten through green leafy vegtables, which is the preferred way to get them, I am sure.  I eat collards and turnip greens a lot, which has to be healthy.

http://www.medicinenet.com/script/main/art.asp?articlekey=10736

max

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Thank you Max for the link, it was very informative ☺

Take care (((hugs)))

Sincerely,

Liz

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