It's been a few months

[TJM]

Great news: Took an Alaska cruise with the family including the mother in law and it was 10 out of 10! Everybody had a great time.

Not so good:  3 of em caught COVID! No serious cases and all are healed up. Personally they can take those Covid shots and........

Most concerning: Just got results from last surveillance scan. Found a lymph node near the heart that has increased from 4 to 9 mm and the pleural effusion on the right side has slightly increased (but enough to note). Onc suggests re-scan in 3 to 4 months. My gut is a PET scan earlier, mainly because it's a lymph node. I've got a lot of lymph nodes still! But it seems PETs aren't as effective finding cancer in lymph nodes? Not sure that's is accurate?

Any and all advice is welcome (as always). Regardless....here we go again.

Peace

Tom

Edit: To add some spice I have been fighting KP for months to get a Primary. You are powerless without one. And my dear wife just had two pacemakers and a defibrillator pit in at 59. Another story for another time.

 

[LouT]

Tom,

Glad to hear the cruise was a 10, sorry about the Covid, the scan, and the need for a new Dr.  I had not heard that PET wasn’t very effective as it is often used in the diagnosis of Hodgkins Lymphoma and has been considered a good tool in the detection of malignancy.  Perhaps others have some additional experience, but it seems to be considered effective, at least it is worthy to be considered.  Please let us know what you decide.

Lou

[Livin Life]

3-4 months seems a long time with those findings.  I'm with Lou on the PET scan... were you thinking ineffective b/c of small size?  I've heard that with very small ground glass opacities though don't know about lymph nodes?

[TJM]

Yes, size. SUV uptake can be quite low with small nodules (per numerous articles). I read a study the an MRI was significantly better at detecting lymph node cancer than a CT (70% to 55%). I should have copied the link.

Got a call from oncology to set up an appointment right away (next Wed). Not at my request. Guessing he took a scan of my scans and didn't like something. Faster we get this ball rolling the better so I'm happy.

Truthfully I don't feel good about this at all. Especially with the fluid build up and just my overall feeling. Not sick but not right either.

Lou. Taking the cruise before my scan was a great decision (on purpose). It really was one of our best vacations ever and we have had some good ones.

Wife recovering nicely. But I am still stunned that out of the blue she needed two pacemakers and a defibrillator attached to her heart and no good theories as to the cause is going to take awhile to absorb. She and I are 100% opposite kinds of patients. She is an avoider I am an attacker. Plus I suck at being a caretaker. But she hasn't needed much assistance.

Suffice to say that I am totally numb. Devoid of fear or hope or even anticipation. My best learned method of coping with the wait.

Oh. Did I mention we are half way thru a major remodel/build of our retirement home. And that I am running that show and using subcontractors (I am no longer able). 

Interesting times.

Peace

Tom

 

 

[edivebuddy]

You just spent 10 days aboard an ocean going petri dish.   3 of the people you were closer with had vivid.  A book maker would say you caught covid and probably more than 3 in your group caught it.  A PCR is very acute at telling if you have an active infection cable of infecting others but that's it.  An antigen test can Tell if you had it.  Covid will cause swollen lymph nodes that can last way after it's detectable. It can also increase your PE.  So if it were me, instead of cancer I'd go with the residual effects of Post covid exposure.  

You have cancer.  Remission or not.  Get sick get swollen lymph nodes they are going to check sooner just in case. But if they were really worried, to hat 4 months would not have been an option.

On PETs and lymph nodes.  Looks at my profile Pic.  That's a glowing PET of more  lymph nodes than I could count.  PETs are great at detecting fast growing cells.  (Cancers) MRI is great at seeing inside soft tissues. But a benign tumor and a malignant one are going to look essentially the same. Where as a PET is usually going to mark it with a bright sign that says over here. 

I have very mixed feelings of KP.   KP  oncology in Fontana saved my Best friends son in the early 90s.  But I despise HMOs.  I have blue cross because I can always self refer if I want.   I can't imagine not having a PCP though.

Your wife's situation sounds scary.  I can't imagine  dealing with my cancer and my better half going through that.

 

Good luck to you both!

 

 

 

[Karen_L]

@TJM No wonder you’ve gone numb— you have a little going on! I fully support pre-scan travel. Having contracted Covid after my own shipboard experience in June, I’m hesitant to try another one. But we still a wonderful trip.

My lymph nodes lit up and waved hello from the screen after my PET scan. (They let me look; if you promise not to ask them anything, the less busy places seemed keen on having me come in for a peek.) I think waiting is an invitation to disaster. Oddly, I’ve had only one PET scan since diagnosis. I do, however, have frequent flier miles at the MRI & CT machines. Sometimes I’ve heard that insurance can be a factor in which kind of test a person gets…?

Keep us posted!

Karen

. 

 

[edivebuddy]

[tgif i guess]

before diagnosis, a pet scan was recommended after an earlier ct.  my primary care did not order it.  as i got worse, i asked to go to an ENT to see why i could not talk.  the ENT ordered the pet scan.  i was told that a diagnosis would be needed before insurance would pay for a pet.  that was not true.  i had the pet before a biopsy.

that pet scan lit up on lymph nodes

as far as cost, the charge for my last pet scan was $35,134.00.  insurance paid $3,566.62.

my mri was in 2022 and i can't see the claim

i have the pet scans and would post a picture, but reading a pet scan is different than other scans,  you have to know how to set the viewer settings.

i did work at the hospital (as a nerd) at one time.  i had the radiologist show me how the areas that absorb the radioactive sugar show up in color.  

as i understand it, a ct is just a series of x-ray images.  a pet is a fancy ct scanner.  when you have a pet scan, if they run you through once fast, that is a ct.  then they run you through again (slower) for the pet stuff (where they see the absorption images).

pet scans and cea blood tests are my security blanket.  

 

[TJM]

Just for those who don't remember me or are new. I was diagnosed with Large cell NET NSCLC in 2020. Luckily (I guess) it was just before COVID so had an RLL resection, Chemo and 55 rounds of radiation. I have been NED since. They found 3 lymph nodes with cancer from surgery (none showed on PET/CT scan but even the large tumor (4cm) only had an SUV uptake of 4.)

So. Not a rookie and not uninformed. I very much doubt it was Covid. Zero symptoms, even mild, and no mention of Covid signs in my lungs on CAT scan. Doubtful to me that one lymph node would ne impacted. If it was Covid the CAT scan would have found much more.

Appreciate the responses and will keep posting new info. Very curious what my Onc will say on Wednesday. He is a new one I've only meant once.

Peace

Tom

Edit: whoops. 2020 not 2000. But I'll take another 16 if offered.

[edivebuddy]

24 year lung cancer survivor is impressive! Congratulations.

[Livin Life]

Glad you're being seen sooner, Tom!  Best with that appointment..... I know you'll let us know how that goes.  Scary on your wife too and then you added about the reno - oh my - can't imagine...  Hang in there!!

[edivebuddy]

4 years is still impressive.  

[edivebuddy]

I guess I deleted my text in replying to @Karen_L

 

I don't recommend this because reading medical imaging is incredibly hard. And can lead to way more anxiety if you don't know what you're looking at.

But..

They will actually give you copies of the entire series in DVD or flash drive depending on how they're set up.  I normally wait right there until it's done.  Now I think I'm going to always go to the main hospital film archive.  They're better equipped. They usually include a Free viewer for Windows.   They have others available for free Athena DICOM essentials for Windows.  It asks you to subscribe each time but it's a great basic DICOM viewer.  Weasis DICOM medical viewer is what I have installed on my laptop.  Windows , Mac OS, and Linux available free.  It's much more capable with a steeper learning curve.

 

Because of my jacked vision a mobile device is easier for me so I now use droid render.   It's a little slow because of the hardware being used but works wonderful for me. If something scares me, I do still go to the laptop. It's the screenshot I upload

 

 

 

 

 

 

 

[Karen_L]

@edivebuddy I thought I responded, but it's not showing up....Maybe a bug?

Anyway, sorry if I gave the impression that I try to interpret what I see. I'd never even suggest doing that. I just genuinely like seeing the body from the inside. I especially find the brain fascinating-- my oncology radiologist knows I like to geek out on the images, and I learn a lot. Before the brain met, we'd look at the lung scans because she thought it was "motivating" for patients to see the effects of radiotherapy treatment. 

Re: the PET: I'd never had a PET scan before and after hearing (and reading about) the test, was interested to see how it would be different from an x-ray or CT.  Because of other tests and conversations with docs, I knew the location of the mass in relation to the heart. When I looked at the screen, the tumor was so...obvious. Then it was easy to deduce what the other things, i.e., lymph nodes, were. 

I completely agree @edivebuddy. Look if you're curious, but leave the interpretation to the experts. 

[TJM]

I try to interpret the images (usually do a poor job) but that's just the way I am wired! I rely on the text, which has been much more successful. 

The main reason is I don't like surprises. So far I haven't been surprised during an onc visit yet and the visits are more productive.

My wife is 100% the opposite! She has a pretty short neck to be an ostrich! But 32 years of marriage must prove opposites do attract?

Tom

[edivebuddy]

I'm with you Tom.  I want to Walk in with enough knowledge to ask questions.

[edivebuddy]

I did not think that at all @Karen_L. I was just putting up a disclaimer before I made it sound easy.

[tgif i guess]

Radiologists who perform PET/CT scans require specific training that integrates knowledge from both radiology and nuclear medicine. Here are the key components of their training:

Diagnostic Radiology Residency: Radiologists typically complete a four-year residency in diagnostic radiology, which includes at least four months of nuclear medicine training. This residency follows a one-year clinical internship, making it a total of five years of training after medical school.

Nuclear Medicine Training: During their residency, radiologists receive training in nuclear medicine, which is crucial for understanding PET imaging. This includes learning about the use of radiopharmaceuticals, radiation safety, and the interpretation of nuclear medicine images.

PET/CT Specific Skills: Radiologists need to be familiar with PET technology, the examination procedures, and the use of iodinated contrast agents for high-quality diagnostic CT scans. They must also be skilled in the interpretation of PET, CT, and fused PET/CT images to accurately diagnose and manage patient care.

Certification and Continuing Education: Radiologists may pursue additional certification in nuclear medicine or PET/CT imaging. Continuing education and staying updated with the latest advancements in PET/CT technology and techniques are essential for maintaining proficiency.

Interdisciplinary Approach: Radiologists often work closely with nuclear medicine physicians to correlate PET and CT images, ensuring comprehensive diagnostic information is obtained. This collaborative approach is vital for the effective use of PET/CT in oncology and other medical fields.

Overall, the training ensures that radiologists are well-equipped to handle the complexities of PET/CT imaging, providing accurate and reliable diagnostic information for patient management.

i skipped all of that with a 30 minute session with the radiologist.  the cost of that intensive training session?  i got the tennis channel on the tv in the reading room.

[TJM]

Your point? Chemical Engineer. Would you like to go over my class schedule? 🤣

[edivebuddy]

On 8/19/2024 at 7:37 PM, tgif i guess said:

 

i skipped all of that with a 30 minute session with the radiologist.

 

Yeah but then you put absolute faith in a doctor with something  that is as much interpretation as it is science.

 

2022 my  a general radiologist read my MRI. His report initially said.

"There has been interval development of thickened nodule enhancement along the posterior and medial aspect of the resection cavity worrisome for recurrence."   

They eventually actually changed the report.

 

"******** ADDENDUM #1 ********

 Findings at the resection cavity most likely due to radiation changes/necrosis rather than recurrence. No solid nodular enhancement. "