Ct scan..yes or no?

[Pat351v]

Is a ct scan necessary for cll? I was diagnosed 2 weeks ago... wait and watch...next visit Jan 2019 but a ct scan ordered. Should I have it?

[Ironj]

I posted a similar post. I’ve had a few cat scans done and that’s when they seen the swollen lymph nodes. After that I had the biopsy and that found my SLL. My Cll/Sll specialist wants me to have a pet scan done to use as a base line in the event I ever need treatment, he will use it to compare in the future. My feeling is I’ve had several cat scans why note use them as a baseline. That being said I’m not the Dr so I’ll do what he wants even though I’m concerned with all the exposure. I would say if they want you to have one you should follow what they want. Did your Dr say why he or she wants you to have a CT done ? Best wishes John

[Hoffy in reply to Ironj]

Did you have a needle biopsy or did they cut out the nodes ? Where weee the nodes ?

Hoffy.

[Ironj in reply to Hoffy]

I had a needle biopsy. My nodes where above and behind my pancreas. They had to go down my throat with an ultra sound guided scope and fish the needle through the scope to get a fine needle biopsy. I was out for the process. John

[Hoffy in reply to Ironj]

They cut mine out of my neck. The surgeon wanted to make more money I am pretty sure. A needle biopsy would have been easier, safer and cheaper. To make things worst I was billed for a plastic surgery procedure. I checked with other surgeons based in the billing codes and they said they were not billing properly.

Dr Saad of Scripps clinic in San Diego was the surgeon. I tried to fight it but they did not care.

I recent having such a dangerous procedure done for no reason.

They could have started with blood tests to start I believe.

Be well,

Hoffy.

[Hoffy in reply to Hoffy]

I resent , typo above.

[AussieNeil Partner Administrator in reply to Hoffy]

I gather a needle biopsy doesn't necessarily give a representative result. Certainly unless you have a very pure SLL presentation, in general, there should be enough clonal B-lymphocytes in the blood for a CLL diagnosis...

[Ironj in reply to Hoffy]

Yes they could have used the needle for sure and collected the cells with the same results. Yes blood test would be the first thing that should have been done I would assume. I had a flow cytometry test done note sure my spelling is correct but that was my test after the biopsy. Then I went to the big guns for a second opinion at Sloan Kettering and they ran me through the mill. A bunch of blood work , Bone marrow Biopsy, flow test , Fish test , micro globulin test mutation test . They even took finger nail clipping to test for over 4000 genetic markers. Dizzying but I’m glad I had it done. All my test came back with all very good prognostic markers . John

[Pat351v in reply to Ironj]

Thank you. She did mention a baseline

[Ironj in reply to Pat351v]

I think the Dr being proactive is a good sign that you have a Dr keeping a close eye on you. Best wishes John

[Marie-54]

The exposure is so minimal. You are exposed to more radiation in an airplane. Get that baseline done as a reference tool for comparison as the waiting game goes on. Lose the fear. It will not hurt you.

[AussieNeil Partner Administrator in reply to Marie-54]

It probably won't hurt us, but please let's not trivialise how much radiation is involved. CLL specialists have moved away from the regular use of CT scans because their use does involve risk which may not be warranted. Having one can certainly bring peace of mind, but it can also increase concern when benign cysts are found too! CT scans aren't regularly done in Australia, but I was reassured to have one, particularly because my CLL started out as SLL, with most of the tumour in my nodes, spleen and bone marrow and very little in my blood. From: radiologyinfo.org/en/info.c...

"A coast-to-coast round trip airline flight is about 0.03 mSv due to exposure to cosmic rays."

:

"Computed Tomography (CT)–Abdomen and Pelvis 10 mSv Comparable to natural background radiation for 3 years"

:

"Computed Tomography (CT)–Abdomen and Pelvis, repeated with and without contrast material 20 mSv Comparable to natural background radiation for 7 years"

So we are looking at the equivalent of about 1,000 to 2,000 coast to coast flights in North America or Australia (not the UK!) for one abdominal CT-scan without and with contrast respectively.

It's worth asking if regular scans are planned and definitely questioning the use of PET or PET/CT scans, given PET scans are not considered useful in the management of CLL according to the iWCLL guidelines.

Neil

[closh in reply to AussieNeil]

Aussieneil has summed it up nicely, as usual. My view is to go with the IWCLL guidelines (no scan) unless there's something unusual about your case to justify it. Radiation efects from scans are cumulative so best to keep these to a minimum.

Graham

[Oleboyredw-uk in reply to AussieNeil]

I agree with Neil on PET/CT scans. Having said that I’ve had one. My consultant was very clear about the reason for that. I had presented symptoms very quickly apparently. Specifically, neck nodes from nothing to very noticeable in a month. His concern was I had something far worse than CLL hence the PET/CT scan, as well as blood tests and cervical lymph node biopsy.

BTW, he didn’t tell me “far worse” until results back and we were looking at the scan image. I think he used the term “check all options” or something like it.

best to all, rob

[Marie-54 in reply to AussieNeil]

At the low doses of radiation a CT scan uses, your risk of developing cancer from it is so small that it can't be reliably measured. Because of the possibility of an increased risk, however, the American College of Radiology advises that no imaging exam be done unless there is a clear medical benefit. In this case , the measureable benefit is the baseline scan which helps in further monitoring of the disease. Life is about the balance of risks.

[AdrianUK in reply to AussieNeil]

What’s really strange to me is why they don’t just use MRI? When I had my tonsil issued they wanted yet another scan before the operation and when I asked if it was possible to do the MRI instead of CT they were happy. I don’t believe CT is any better at showing lymph tissue than MRI. It’s probably a cost thing. I think we should be campaigning for them to relook at this. Unfortunately in clinical trials you have no choice but having CT usually.

[Pat351v in reply to Marie-54]

Thank you

[Hoffy]

CT scans have a lot of radiation I am told. A base line might not be bad but later it is better not to do.

I switched to MRIs for my trial.

They are more expense and take longer but does not have the radiation.

See a CLL specialist before any treatment . CLL society web site is very helpful.

Be well,

Hoffy.

[Tommays56]

Well

Why did I get CLL in the first place there our two pretty good possibilities

1. 15 years of daily exposure to printing chemicals starting in 1975 and this possibility has been accepted in Canada as fact in the last year more or less making printers access to treatment much easier

2. X-rays I have been injured pretty badly over the years in a series bicycle and other sports accidents and have had a lot more than a normal amounts of all types of X-ray , MRI and various scans

It really doesn’t matter now but I would still like to know what started the DNA mutation as just like the fluoroquinolone toxicity that happened in 1989 and still cause me problems the more time that passes the worse the black box warning gets on the drug and I was just given it without needing something so last resort as some kind of getting it out on the market

I still cringe evertime I am at a doctors office and a drug sales person drops off samples of the greatest new thing

[Indolent]

While many doctors are CT scan crazy, it is undoubtedly it is up to you to be your best advocate in dealing with this disease. With a case of SLL, an initial scan is probably advisable because of how it might affect internal lymph nodes. This is a reasonable concern. However, beyond this initial scan, I would question any further scans if you are not showing any other relevant symptoms.

As always, seeing a CLL specialist should be at the top of your to-do list.

[Pat351v in reply to Indolent]

Thank you

[W00dfin]

I had annual ct during WW. Now every 6 months on Ibrutinib.

[Yuck]

Why? Are you in a trial? Seems unusual to me. Are you in the U.S.?

[Pat351v in reply to Yuck]

I'm in usa....I was diagnosed thru 2 sets of extensive blood tests then she said this is a baseline ct scan and we will meet in January