How does a person even "know" if they have this type of cancer? - 1244758

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carey46
How does a person even "know" if they have this type of cancer? - 1244758

I don't know how people can even tell they have this type of cancer. I have some weird looking MRI"s. I know you don't want to give people a diagnosis, but I would like to just get a "feeling" from someone about whether or not these pictures (set 1 and set 2 might be cancer or not).

Can anyone give me a "possibly yes" or "possibly no" answer?

I have had breast cancer in the past, and have had no problems. But in the past six months I've had a very swollen arm and breast and a cough for about 8 weeks. Doctors tell me this is all in my head but by looking at these pictures I think it might be caner. Since my sonograms turn out perfectly fine I just can't understand why I'm having these symptoms.

The only bigger problem I have is that I have untreated advanced Lyme disease and falling blood platelets (and my spine kills me)..

Can anyone just give me a "possibly yes" or "possibly no" answer by looking at these pictures, even if they don't say one single word more? Thanks.

I will separate the address so as not to build up your band width, so people can't get there by going directly through your site. There are two sets of pictures - the front of the body and Set 2, the spine

The address is /digifind3 To get there though, you have to add members.shaw.ca in front of it and then click on MRIs when you are there.

If you don't want to leave a message there, I can check back here for one. Thanks. Much appreciated.
(By the way, I have been told that those white spots are water, but I"ve never seen water that shape before. But it could be with all of the swelling. I'm afraid I will die if I don't find out for sure because if I don't find out, I obviously can't get it treated).

Dr West
Reply To: How does a person even "know" if they have this type

I'm sorry, but this isn't the kind of service we can offer.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

craig
craig's picture
Reply To: How does a person even "know" if they have this type

carey46,

It sounds like you'd need (a) your own lung cancer oncologist to review those scans and (2) if it looks suspicious to them you'd want a biopsy taken, either via a bronchoscopy procedure or a fine needle or core needle biopsy poked right through the body.

Sometimes when a scan looks a little suspicious doctors will wait a couple of months to take another scan and see if the suspected thing is growing or not. If it's getting larger, they then go into high gear with biopsy work and scans.

If there is something solid-looking and growning in there, you'd need a biopsy to know exactly what it is. Sometimes a thing like that can be benign or even a fungus. On the other hand, there is enough never-smoker lung cancer out that seems symptomless for a long time there that sometimes the possibility of lung cancer gets dismissed too easily when it shouldn't be ignored.

Bottom line: If you are concerned, see an oncologist, preferably one who specializes in lung cancer. If you doubt their judgement, get a 2nd opinion from one with a more impressive reputation.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

carey46
Reply To: How does a person even "know" if they have this type

Thanks. I did read the reports and there is nothing suspicious in the reports. However, that's the problem with MRIs. Doctors cannot read them. They are not taught how to do so. So patients have to rely on what they are told by whoever interpreted them which, for all I know, could be someone in India. (I know many are Interpreted there to save money, but I don't know just how many are -- and in saving the money I suppose they could be interpreted poorly as well).

Even if mine were interpreted in Canada though, there would be no way to get a second opinion. In Canada you can't speak to any radiologist regarding the results, & I suppose it's also the same elsewhere. You first have to get written permission from a doctor (who won't know if it's suspicious because he can't read them & won't look at MRI's because they are too confusing), & from there that doctor will refer you to another radiologist.

This is the case even if you pay for that second radiologist. In other words, when a radiologist knows that another radiologist's work is in question, he is likely to not go against the words of the other, to protect those in the radiology field. This way, if you should have cancer or other overlooked diseases, neither doctors nor radiologists can be held accountable.

Patients can't even send their pictures overseas to radiologists, if they want to pay them to have them interpreted, because they won't interpret them at any cost for a patient.

This concerns me a great deal, because I'm of lower income, having had cancer, possible Lyme disease, falling platelets, & many things seriously wrong, and after being told that stronger pills aren't recommended to actually shrink a now 1.2cm pituitary tumour any faster than by basically"maintaining" it at current size (due to government cost which would be an extra $20 monthly for a weekly .5 dosage versus the current .25, I wonder how much other diagnosis and treatment is not being acknowledged.

carey46
Reply To: How does a person even "know" if they have this type

Sorry, I said $20 monthly. (It's $80 for 3 months now, so if I were to get pills that would actually shrink the tumour rather than maintain it at current size, it would cost government $160 for three months instead of $80.

carey46
Reply To: How does a person even "know" if they have this type

Also forgot to mention that people just can't go to see a lung cancer specialist here. They first have to be referred, and they won't be referred unless their doctors find their MRI's suspicious, and their doctors won't find them suspicious because no doctor can read MRI's. I often have serious bouts of tremendous chest pain that feel like massive heart attacks. They told me to keep a diary of them, but I'm afraid that if I keep a diary instead of go in to get an EKG (and often also x-rays which I don't like) each time, one of these days it will be an actual massive heart attack rather than a spinal attack. So in my eyes, that's kind of like being told to keep a diary of everything I think is a heart attack. Why would I keep a diary? I want to make sure each time that it "isn't" a heart attack! Who would keep a diary if they thought it was? Each time I get one of those it's like a bullet that goes from the spine to the heart (or vice versa). I know it's hard for doctors to assess this when you have such bullets because they want to know whether I'm complaining about the spine or the heart, and I simply can't tell them because they happen at the same time.

I suppose that could also be from Lyme disease though, rather than anything actually physically wrong, because my lymph nodes and liver hurt too. On the first Eliza test I did have antibodies to B. Burgdorferi, Afzellii, and Garinii, but the Western blot test came out negative, meaning, it seems, that I don't have it after all. The first test simply identified antibodies that weren't there it seems.

catdander
Reply To: How does a person even "know" if they have this type

If you have the scans to share with us you can share them with another radiologist for a second opinion.
I'm sorry you don't have confidence in your system but I can't imagine there are radiologists who would lie about what they see on an MRI because someone else doesn't see it the same way. They've spent a lot of time and money to be able to do it and aren't likely to be persuaded to give wrong info on purpose. It doesn't help their career.
I agree that scans can be misread, that's what your concern is. I'd suggest taking your scans for a second opinion. I don't know how the Canadian system works but most have room for 2nd opinions.
While doctors aren't trained in reading scans most have a good idea of what they are looking at, especially if they know what they're looking for.

You obviously have something going on and I hope you and a doctor you have confidence in can figure it out.
Craig has given you some very good information about what doctors look for. However if you aren't being seen by an oncologist for breast cancer it's unlikely you will be able to see one without a diagnosis of cancer, In the US they only see people who have a diagnosis.

This link takes you to an explanation of how lung cancer is diagnosed once you get there click on the big green square to see slides and hear presentation or you can read it by clicking on the transcript button. http://cancergrace.org/lung/2009/10/17/dr-silvestri-on-lc-workup-staging/

However if you prefer reading this may be better reading http://cancergrace.org/lung/2010/05/12/general-work-up-and-staging-of-lu...

I hope this helps
Janine
forum moderator

carey46
Reply To: How does a person even "know" if they have this type

Thanks. Will read those links later today. I'm not concerned that radiolgists might "lie" as I am about the fact that they might "omit" things, which some wouldn't call a lie. And I only had that concern because I'm not allowed to get drugs strong enough to make a big pituitary tumour shrink - but only enough (absolute minimal amount) to keep it "stable" because of government costs. Currently my pills do cost the government about $4 a week (at a guess if you take out prescription filling fees and likely discounts) and if I were to receive drugs effective enough to actually "shrink" the tumour it would cost them $8 a week, which is too high, which is why I wouldn't be in total shock if I heard that radiologists were asked to be not "quite so precise" in noticing every little thing if they wanted continued government business. .

Re taking the scans to another radiologist, also can't do that without a GP referral. Canada is a bit different than the USA that way I think. Would your doctor give you a referral to two radiologists, or even two specialists? That sort of thing is almost unheard of here. I've never heard of a Canadian who has done that regarding an oncologist or radiologist. I think it would also be considered a huge insult! Even if I did get a referral I suspect a second radiologist might NOT want to catch something another missed because it would make the first look bad. That was why I was wishing there was some way to get a 2nd assessment out of the country by mail.

About the breast cancer, I already had a segmental mastectomy about 4 years ago (chose no radiation or chemo). I think the underarm swelling,crawling bug sensations & falling platelets may be as a result of Lyme antibodies first specifically identified and then shown to not be there on a second test. It's only breathing and heart-attack like issues I have problems with now, (& low platelets), which made me think "lung" right away. Thanks again.

craig
craig's picture
Reply To: How does a person even "know" if they have this type

I would imagine that even in Canada there are some oncologists and pulmonologists who just plain like being better, like that House character on TV. Cost is another question, though; that might mean private-pay instead via the goverment plan.

I am skeptical that any doctor would deliberately not report a suspicious finding. I assume that in Canada they'd get sued for malpractice for such a thing and wouldn't risk it.

If you can get your scan on disc, you can go anywhere you want with it. I always get a copy of my scans to keep with my own records at home.

Best hopes,

Craig

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

carey46
Reply To: How does a person even "know" if they have this type

Sorry to flood your board like this and promise I won't go on it again for a few days so as to give others time to also have input. It looks bad when too many messages are from one person.

Maybe people could see a private specialist here, if they first saw a private GP, but yes that would cost loads of money!.

The comments about doctors getting sued for malpractice in Canada were a bit funny though because I don't think doctors in Canada get sued unless they do something involving many deaths! Sex related charges can also be heavy; otherwise they are basically protected from pretty well everything.

Once I asked to get my tubes cut, for example, & when I woke up they told me they decided to tie them instead in case I decided to change my mind in the future. I was really furious that they didn't tell me that before the operation! The decision had been very clear! I didn't want those clips in my body & am very angry every time I see them on an x-ray. We don't have lawyers in Canada like they have in the US, who are brave enough to tackle malpractice suits. That's why you will rarely see Canadian ads looking for that kind of business like you do American.. Medical organizations here are so strong that few lawyers dare get involved.

Even though our provincial opposition parties have demanded a public health inquiry in the legislative assembly, for example, & most people want it, (I think 70% in polls) there is no way the ruling government would ever allow that! They have refused & the courts won't interfere. No one wants to get involved with medical legal situations period.

Re putting the info on a CD & taking it to a radiologist, you can't do that either. Even a private one won't do it without recommendation from your doctor (I already checked) & it's highly unlikely that any doctor would give such a recommendation. I even tried contacting India for a quote & they won't do it for patients either. They only interpret for doctors. Thanks tho.

Dr West
Reply To: How does a person even "know" if they have this type

I don't know if there are US-based radiology groups that will read scans at the request of the patient, but I believe there are. The expectation would be that the patient would pay for it, but I believe that, for one, the private group that I use for a lot of the radiology interpretations I need (Seattle Radiology -- you can find them online) does second opinions and would accept a request and payment from someone who sent records on a disk. I don't believe they would feel more loyalty to a radiologist they don't know in Canada vs. the patient who purchased their interpretive services. I entrust them with the interpretations I need for my patients, and when I had a cough that wouldn't go away after several months, I went there for a chest CT.

But my point is also that if I only have to think as far as the radiology group I use for my own patients, there are probably many groups out there, regardless of the policies of radiology groups in India, that would interpret scans done elsewhere for the cost of their interpretation.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education