Ct scan?

[Floridagirl49]

We saw the oncologist. She is doing a detailed blood test work up but she also ordered a Ct scan. The radiation makes me nervous and I’ve read that it generally isn’t needed to diagnose CLL. Should I ask her if we could forego that and just do the blood testing right now? If she won’t, I’m wondering if going to Moffett cancer in Tampa might be better. I feel like crying constantly.

[Floridagirl49]

Hubby had no symptoms except for lymph nodes swollen.

[GMa27]

I never got scans till I was close to treatment. Blood tests and BMB to dx.

If you are near Moffitt, definitely get second opinion there. I got my second opinion @ Moffitt and was treated closer to my home. All my docs agreed.

[Floridagirl49 in reply to GMa27]

I think I will ask to go to moffett and decline ct. Since he’s not symptomatic, and his spleen and liver felt good.

[GMa27 in reply to Floridagirl49]

Moffitt will know what to do!

[PlanetaryKim]

I personally would decline a CT scan in that situation, but that's just me. Like you, I am very concerned about any unnecessary radiation exposure and so avoid it. It's the patient's right to decline any treatments or procedures. Good luck!

kim

[Floridagirl49 in reply to PlanetaryKim]

Thank you.. we were not even asked, we were just told she wanted to do a full work up. He was a work in... and she was nice but rushed and didn’t want to answer questions. Is it like this with most oncology in the US? We could see people doing chemo as we walked into examine room. If this is the norm , this system seems morally bankrupt and just awful for patients. It seems like you’d get “run over” if you weren’t your own advocate.

[Kokobean in reply to Floridagirl49]

We’ve had these experiences too until we went to see the specialist. What we found lacking was empathy for the patient especially at diagnosis and when treatment was being advised. They acted like my husband had a cold. Yes, you do need to advocate for yourself or your loved one! Best Wishes .

[PlanetaryKim in reply to Floridagirl49]

You do really have to be your own advocate in health care matters - even if your doctor is considerate and willing to spend time with you. I am very reluctant to have any kind of medical intervention because it is generally all so toxic and is derived from a philosophy that defines health and healing very differently than I do. However, having said that, medical intervention has saved my life several times now with 2 cancers (and ongoing with my daily ibrutinib for the CLL). Nevertheless, I do make all of my own health care decisions. Sometimes my decisions line up with a doctor's recommendation. And sometimes they don't. Sometimes I even change my mind after trying a less toxic approach that doesn't work.

Also, don't forget: most tests you decline now, like CT scan, you can always add later. It's not like that door is closed forever.

Although it's hard at first, just remember that even though your doctor is telling you what to do as though it is pre-ordained fact... in reality the doctor is making a recommendation, and you & your hubby will decide what to do, what tests to have or decline, what procedures to have or decline, what drugs to have or decline. Some doctors have to be told this outright - reminded that their role is advisory in nature, not dictatorial. I find most doctors figure it out for themselves as soon as I start discussing how I plan to proceed in regard to their recommendations.

Very important to start getting hard copies of all lab results, pathology reports, radiology reports - basically get all the results of any tests done on your hubby. Even if you don't understand the test results in full at this point, you will soon enough with ongoing self-education. And you need to have all the information in front of you to make your own health care decisions.

best,

kim

[Floridagirl49 in reply to PlanetaryKim]

Thank you so much. I always feel so much better and empowered after being on this board. I just adore all of you. This maneuvering of the healthcare industry is so hard.

[Kokobean in reply to Floridagirl49]

I think you are in the same boat as me or it sounds like it; advocating for our husbands who maybe wouldn’t if we weren’t doing it. I feel for those who don’t feel well but have to do the advocating too. Bless you!

[1ofakind in reply to PlanetaryKim]

You are so right !!

When we don’t feel well or are frightened it’s so much easier to put yourself in someone else’s hands ...,

Expert advice is invaluable but bottom line we have the right as well as the responsibility to accept or reject the advice ...,

Remembering that we too might have to rethink and change our minds ... Being aware and knowledgeable is very helpful and this site is great for checking information .Be well !!

[cujoe]

Floridagirl, Please don't cry over this. I first sought medical attention and was diagnosed due to an enlarged lymph node on the side my neck. I initially went to an ENT doctor to rule out a spurious cause for the lymph node. A CT scan was part of the ENT's diagnostic routine of that evaluation.

My "official" diagnosis of SLL/CLL was based on the surgical biopsy of the node on the side of my neck done at my chosen cancer center (Duke). By the time I went for that surgery I realized I had quite a few other enlarged lymph nodes in different locations in my head/neck area.

Others here can better comment on any reason that a CT scan would be NEEDED at this point, but in 12 years my Duke HO has never ordered any scans related to my CLL. (Altho' my HO is an oldtimer like me (i.e., 70 ish), and I believe he has the time-experienced "educated fingers" that allow him to perform adequate external "scans" for enlarged nodes & spleen with his hands.

See what others here have to say, but try to relax for the time being. Help is on the way, Girl. Try putting together your shopping list for that hippie van you will want to get some day. Breath Deeply, Stay Calm, & Be Well - cujoe

[Floridagirl49 in reply to cujoe]

Awww thank you so much. I think I will call and decline ct at this time. It was a horrible visit , we were work ins , the doctor was rushed and didn’t want to answer questions, bam she ordered a ct without asking us if that was ok. Uggh , we could see people doing chemo as we walked into the examining room. I think the whole experience shook me emotionally. Thank you for your kind words. Yes to the van.❤️💕

[Name-1]

Ultrasound is better variant.

[MelioraDay]

I declined a CT which was suggested just prior to treatment and not at diagnosis. I requested an MRI instead. My insurance covered this here in the US so my CLL specialist agreed. Imaging was needed in my case to determine all lymph node sizes in order to know if my Venetoclax ramp up could safely be done outpatient or if hospitalization would be needed for initiation of treatment and at dosage ramp ups. It’s so important to be your own advocate in your health care. Sometimes things are done just because it is the particular doctor’s routine of many years, and may not always be based on the latest research findings. Seeing a CLL specialist is really important, but even then you need to educate yourself as much as possible and be an active participant and advocate in your care.

[Jennybeach]

My mom is having a baseline ct in April. She is stage zero. You need to weigh benefits vs risks and a one time CT may catch something not caught earlier. I’m sure the longer time patients here could weigh in with their opinions and experiences

[Marie-54]

Is your diagnosis CLL or SLL? The big difference here, is SLL cannot be monitored through blood tests alone and a baseline CT scan is really integral to know what nodes are impacted and by how much? I do NOT understand the over the board fear here of these scans. The dyes are flushed out of the system really quickly, and the benefit outweighs the risk in my opinion. I think you have more risk of contamination from holding those dirty menus in a restaurant, or flying in a plane, than risk of developing any type of serious complications from the dyes in a CT scan.

[MelioraDay in reply to Marie-54]

The issue isn’t the CT dye (unless you are allergic to iodine). The issue is the amount of radiation from the CT itself which uses xrays. And actually, if the CT is done without and then with contrast, which it usually is, then you double the amount of radiation since the scan is done twice. There is risk associated with radiation which increases with each CT you have. It is difficult to quantify that risk for an individual, but certainly keeping it to a minimum, if there are options, would be preferable.

[Marie-54 in reply to MelioraDay]

Per the FDA - the chance of having a cancer devlop in a normal individual is 400 in 2000 people. the odds increase by a quantity of 1 to 401 in 2000 people from the radiation in a CT scan. In other words - you are 400 times more likely to develop cancer with or without a CT scan so I do not consider that 1 in 2000 chance worth worrying about.

" A CT examination with an effective dose of 10 millisieverts (abbreviated mSv; 1 mSv = 1 mGy in the case of x-rays.) may be associated with an increase in the possibility of fatal cancer of approximately 1 chance in 2000. This increase in the possibility of a fatal cancer from radiation can be compared to the natural incidence of fatal cancer in the U.S. population, about 1 chance in 5 (equal to 400 chances in 2000). In other words, for any one person the risk of radiation-induced cancer is much smaller than the natural risk of cancer. If you combine the natural risk of a fatal cancer and the estimated risk from a 10 mSv CT scan, the total risk may increase from 400 chances in 2000 to 401 chances in 2000. "

[Floridagirl49 in reply to Marie-54]

The doctor has indicated that she believes it is CLL! Of course the more detailed bloodwork will verify this and give us prognosis.

[Anastasia1]

I am fortunate to be able to attend one of the monthly support groups with the CLL society in California which Dr Brian Koffman attends regularly and the one thing I hear over and over is that a CT scan is only needed when treatment is starting and this also comes from my CLL Expert. Best wishes to you.

[Panz]

You are getting many suggestions from our community and you were spot on when you said you have to be your own advocate. I try very hard to never tell others what is best to do, however, by the tone of your opinion of your initial appointment I am of the opinion that if Moffet is an option that is where I would go...they are great and will hook you up to what ever will work best for you. This is tough stuff but you will work your way through it. Please keep our community update. I wouldn’t write off the doctor you initially saw as I find it rather unusual that they would even agree to work you in and hence that was why the rushed you thru....sad but the medical people don’t put themselves in our place very often...that is rare! ☘️😍🙏💕

[Sepsur]

It does seem counterintuitive to be stuck in a radioactive tube to help diagnose a cancer😱. Over the last 3yrs I have had 5 CT scans & 2 x MRI scans, some biopsies, 2 x lumber punctures, 2 x bone marrow biopsies - if you just looked at my blood you would think there was little disease - mine is packed into my bone marrow & lymph glands - there are plenty of these deep internally which can grow to quite a size - causing issues, without showing in the blood tests - hence their need to do scans. I took the decision that if it gave everyone the full picture of what was going on, then it was worth the risk. It is difficult to choose a benign path with CLL - even the fairly gentle treatment of IVIG has its own drawbacks etc etc. Hope you find your way through the maze.

[Floridagirl49 in reply to Sepsur]

It is quite the jungle out there. I just have discovered that I have a deep mistrust of western medicine. I’m sure it has to do with painful loss of so many people I love from cancer, one minute they were functioning well etc.. and the next day diagnosed and just downhill from there resulting in my deep grief. I know all stories don’t end like this... just all the peeps I’ve loved. And now the scary “C” word about my best friend other than Jesus in this universe, my hero, my friend. I’m glad I found this board though... a bit of sunshine.

[MelioraDay in reply to Sepsur]

There is no radioactive material in CT IV contrast dye. The radiation comes from the CT scan itself, not the dye.

[closh]

The latest IWCLL guidelines say "CT scans are generally not required for initial evaluation or for follow up". CT scans are recommended for clinical trials but even then it recommends minimising these as "Additional, repetitive CT scan monitoring is usually not clinically relevant and potentially harmful for the patient".

Bottom line, unless there's something unusual about your case, I would refuse the CT. No need to get too stressed about the radiation exposure but it is ionising radiation that has a cumulative effect. CT scans can have the same radiation as 100-1,000 normal x-rays. I would ask your doctor for the reason why this is needed and mention the IWCLL guidelines. If there's no justification, save the scans for when there's a real need.

Graham

[MsLockYourPosts Passed Volunteer]

A baseline CT scan can be useful in some cases, but you have the right to ask why it is being ordered. Also, whether an MRI would give the needed information, if your insurance will cover it. Keep breathing, and don't be afraid to ask as many questions as you need to to feel that you are making the right choices.

[Judyanne]

Hi, I wish I had a scan in 2013 when first seen by hematologist for low blood counts as my kidney cancer would have been discovered sooner rather than in 2016 at stage 3, grade 3. Subsequent scans for kidney cancer revealed many enlarged lymph nodes and nodules so diagnosis changed from Sll to Sll and/or enmzl. The only thing that could be felt on physical exam was my spleen. I am all for one baseline scan via ultrasound, xrays, ct or mri.