PET scans and labs...

GreenEyes81

I've searched and googled... lol

Can you have normal labs and yet have bone mets found on a PET scan? Or any other mets?

moth

yes, you can. Blood labs will often get out of balance when mets are advanced - liver especially, and often bone. But you can have mets with normal labs. Imaging is a more sophisticated diagnostic tool than bloodwork.

Are you getting scans?

Anonymous

yes, mine were at diagnosis and still are. Including tumor markers, which occasionally go a few points (like 5) abovenormal range, but that's it. Need scans and biopsyto be sure of what’s going on, blood tests are just a possible indicator, not definitive.

Anonymous

Yes. My blood work was normal, and tumor markers low when I was dx. Tumor markers are still now and normal - my oncologist does not use them as an indication of anything in my case.

My current blood work gets impacted as a side effect of Ibrance (lower white blood cell count) but that is to be expected.

Edited to add: Are you scheduled for a PT or CT scan? Hopefully they are clear and you are aok. Be persistent - if you think there is something going on, get scans. Keep us posted.

candy-678

My blood work looked picture perfect when I was diagnosed-- even liver enzymes. And I had a baseball sized liver tumor and bone mets. My tumor markers were a bit elevated above normal, but not horrid. So for me scans are the real teller of the cancer story.

buttonsmachine

Unfortunately, yes. When my mets were first diagnosed my labs were still totally normal. Now that my mets are worse my labs have gotten a little wonky just lately...

What scans are you getting and when? I hope you get benign results.

GreenEyes81

Thank you all for your quick replies. I hadn't been in the Community for quite sometime and saddening remember you all this morning. You have not failed me!

I saw a new Onco yesterday, whom was freaking awesome!!! Ya!!! I had mild back pain and in Jan 2020 a CT scan. They didn't find anything other than possible early arthritis (but not visible) and and some mild degenerative changes in the L5-S1. So basically tired some physical therapy and then covid hit and I stayed home.

It is increased considerably, on Alive twice a day as Tylenol and Ibuprofen is not enough. Its intense and nothing seems to help at this point. Also durning her manual exam she felt a couple of new lumps in my arm pit (cancer side) that are tender. Possible lymph nodes....

Safe than sorry---she decided she wanted a PET asap. I got one schedule 10 days later, 3/10. I wasn't too worried until the scheduler said my doctor wanted its stat, added me to a cancelation list and asked me to call several times a day to try to catch a cancelation. I'm not putting myself through that....the 10th will be just fine.

My labs are all good except one thing, Aninon GAP, it was a 6. I don't understand what that is.

exbrnxgrl

My blood work always looks great! My mo doesn’t do tumor markers so I can’t comment on that. Imaging followed by a biopsy, if possible, work well. This is one convoluted disease, isn’t it?

buttonsmachine

It's nice that your new MO is being proactive. It's definitely good to get it checked out. 3/10 really isn't too far away, and you should have the results very soon after that.

I don't remember what the anion gap is, although maybe someone else will know.

jhl

Anion gap is a calculated measurement of how your body is handling hydrogen, chloride and bicarbonate ions. It is only useful in critical care medicine. If you do not have a problem with pulmonary or renal function, your body will equalize everything over time. Remember, your blood values are only a moment in time and the body is a very sophisticated machine.

GreenEyes81

Well...my insurance will not cover a Pet Scan with out prior "info" gathering. Instead I have a breast MRI Tuesday and a bone scan on Wednesday. THEN, if anything is still concerning I can get a Pet Scan.

Is this normal? If no clear answer is found or they try to say "its something else" should I push for a Pet scan?

Not sure how I feel....other than my back freaking hurts and even if its not cancer I need to figure out what it is and get it fixed.

Anonymous

Nuclear bone scan is also good at detecting mets.

Anonymous

Green Eyes - Thats not too bad a compromise - is the breast MRI for the nodes she palpated? A bone scan + another imaging approach is pretty standard - it'll just show where the tracer is taken up but not why it is. If it does flag something, then a CT follow up will give a good look at the bones and nerves, or an MRI will work too. I get full spine MRIs for them to check the health of my overall spine, but the mets show up on CT better. When my L5/S1 disk herniated in '16, I had lower lumbar MRI (with different picturing) so the doctors could get a look at what was going on and causing the nerve impingement. If its not mets then youll need a referral to a neurosurgeon to figure out what is going on in there.

Where is your back pain located and how does the pain present? Does it get worse by the evening and overnight? What, other than pain relievers, helps to manage the pain (e.g. ice, cold)?

buttonsmachine

GreenEyes, sometimes other tests can be done, and sometimes these can help support a case for getting a PET scan. (Personally, I don't see why insurance does not always approve a PET scan when the doctor wants one, but our insurance companies are always looking for ways to save money I suppose. Sometimes it ends up costing insurance more though, because after running all the cheaper tests, you will eventually get approved for a PET scan anyway. It can be frustrating for the patient and the doctor, and just drags things out and puts us through more procedures.)

In any case, when my bone mets were detected, they were detected on a PET-CT first. We were considering radiation as I was ogliometastatic at the time, but the lesion was unable to be correlated on the CT component of either the PET-CT or the CT at the radiation planning session. We then did an MRI just to try and get a better look at things, as the lesion as inaccessible to biopsy. Meanwhile, some other mets were found, so that was all put on the back burner and I started systemic treatments.

My point is that imaging, while good, can look at things very differently. I think it is good to push for a PET scan, but you might have to jump through a few hoops before it is approved. Frustrating, but it happens. It doesn't mean you wouldn't benefit from getting one. They also go partly off of your symptoms - I'm not saying to make stuff up, but if you are hurting somewhere, don't hesitate to tell your doctor, over and over, so it is solidly in your medical record. Your doctor will help you to access the imaging that is most appropriate. Best wishes.

GreenEyes81

buttonsmachine - Thank you. They did say if anything was left questionable after the MRI or Bone scan then my insurance would approve the Pet scan. At this point, I just want answers for the pain. I will not stop with another "probably arthritis". I figure, correct me if I am wrong, even if it is mets at least I can get help with the pain? And if its something else, I will still be able to get answers and help with the pain I guess.

Back to the waiting game which as we all know is the worse.

buttonsmachine

Absolutely! Your doctors can probably help with the pain before you find out what is causing it too - I'd definitely mention it to them. The larger plan might change some once you know what's going on, but my advice would be don't stay in pain in the meantime while you're waiting! I hope you get some answers soon.

GreenEyes81

A bit of an update....still headed down this road. Two issues, back pain and mystery lumps in my armpit-cancer side.

Back pain- Nuclear bone scan showed nothing, no mets or indication of why I am in pain. Onco referred me to my MD for further testing.

Breast MRI for lumps---it did not show anything and my Onco said all is good see you in 6 months. ;/ I asked about the two lumps she found and she said they didn't show up so nothing to worry about. At this point...that does not make any since to me.

Prior to my scans I started preparing for the worse...and called Cancer Treatment Centers of America. Was very happy with my 2 hour phone call and had already set up a Telehealth call to review results of these two scans.

CTCA doctor advised I needed a lumbar MRI for my back pain. He said it was great the bone scan was clear, but with no real answer to my back pain it could not be ruled out. Though he felt it sounded more "orthopedic".

He also did not agree with a 6 month follow up and recommended an ultrasound for the lumps, which I agreed.

I went ahead and made an appointment with my MD to request a local MRI (CTCA would do it but the contrast they use I had a reaction to in the past) and decided I would see if this doctor could feel the lumps. I was still concerned it could just be lymph nodes. Well....she could still feel them this morning...weeks later. She also read my breast MRI report and the radiologist recommended an ultrasound NOT A 6 MONTH FOLLOW UP!!!

Still trying to decide on next steps I went ahead and scheduled a ultrasound locally....but when I did that the tech was rude and tried telling me they would do a mammogram first. Heck no...I had DIEP recon and the lumps are deep in my armpit.

So I have decided to get my MRI local and fly out to Phenix, AZ and establish care with CTCA and have the ultrasound there. I have a feeling its going to to turn into a biopsy or two. The last time I heard "it feels like a lymph node", we are not worried it turned out to be a recurrence on my chest wall.

Any here been to CTCA? Recommendations? Feedback? I'm all ears.

TIA!

exbrnxgrl

I am so sorry that you're still in mystery mode. I have no medical advice, just good thoughts. You might want to enter CTCA in the search function and see if you can find other members who have been there. My personal recollection is there are a few members who have used CTCA but not very many. All the best.

GreenEyes81

Thank you!

buttonsmachine

I have not personally used CTCA so I can't really comment there.

If you're thinking of changing oncology teams, you you might want to see what NCI designated, comprehensive cancer care centers are within reach for you. These are research hospitals which are recognized as being at the cutting edge of the field, and even generally have better outcomes.

https://www.cancer.gov/research/infrastructure/cancer-centers/find

GreenEyes81

Well...I thought I would give a quick update. Good news ....bad news...but could be worse news. lol

Good news....a 2nd lumber MRI showed I have a herniated disk. Who would have thought one would be excited over that. I am! No mets to the bones.

I was looking to go to CTCA...a flight out of state and I would hate for the expense, time, etc only to get there and find out these two lumps "disappeared" and all was well. So I held off, got a 2nd appointment with my local PA. New doctor, 2nd opinion, new hands.....she was also able to feel the lumps 2 weeks later....they did not just "go away".

After two small issues with my local hospital I am just not confident in their care. I have been stage 1....twice. I can not afford to have delayed check ups and risk waking up with stage 4.

So I am flying out to CTCA on Sunday...a round of appointments both Monday and Tuesday which include an ultrasound of the lumps. If they are found....I would fully expect biopsies based on past experience and medical history. Soooo....good news..cancer might be back but not looking like mets. Thats the bad news that could be worse.

Perspective on life.... surprising my husband with a Harley motorcycle tomorrow. Was going to wait till June when we were debt free.....would hate to miss out on making memories should this time be my time. If its back....I'm not sure I will turn chemo down as I did in the past. You can pay the debt and bills off with my life insurance. hahahahaha

Here is to living life to the most everyday, not waiting for tomorrow.

MinusTwo

GreenEyes - I hope you do OK, but I definitely agree with Buttons. If you're going to travel, it would be best to go to a NCI cancer center. That's what they do best. Personally I wouldn't travel anywhere else but the closest NCI group - or at least to a major medical center like Mayo or Johns Hopkins or MD Anderson.

MinusTwo

Sorry - I just realized this is a Stage IV forum so I deleted my post.

Anonymous

minus two, this is the area “open to all”

MinusTwo

Thanks Olma.

My post basically reinforced what Buttons said. If I were going to spend the money & time & hassle to travel, it would be to an NCI facility or a major research hospital like Mayo, Dana Farber, Johns Hopkkin, MD Anderson. They are the experts.

exbrnxgrl

minustwo,

I agree with you but CTCA has a big advertising budget despite the fact that their treatments are pretty standard. They do offer some integrated services, such as nutritional counseling, I can find these services (minus the more luxurious accompaniments) through my current providers. Very few on bco have gone to CTCA but some who have were quite satisfied. I actually called them out of curiosity years ago. When I told them who my health insurance provider was I was simply told I would need to pay $25, 000 up front , period. I think the person I spoke to snickered a bit.

GreenEyes81

Thank you for the feedback on CTCA. I tried to research on here and found more "opinion" than fact. I have a good friend going to CTCA that has a rare lymphoma cancer and has had NOTHING but positive feedback and was the reason I called. I do not personally agree in the full on "MD" approach of chemo and pills. I do not do as told but ask questions and want to understand my options and what is best for me. I have gone to three states for treatment in the last 4 years and not a single one has offered anything except a western medical approach. I am in Idaho now and there is nothing but that here so if I want something else I have to travel....I am more interested in a balanced approach. Which includes holistic options, even if those holistic options are only for side effects of chemo. I do not go far right or far left, but feel there is value in both.

I live 3 hours from the closest real hospital for treatment.....round trip-6 hours of driving. And they do not put all "tests" together. I have made 4 six hour round trip drives just to get to this point. So flying to another state that will get more done in two days than my local hospital will do in a month...is a time saver. The closest NCI is in Utah and happens to be were I went for 2nd opinions and reconstruction. An AMAZING hospital and I plan to go back for the last recon surgery I still need. However, they still did not approach treatment in the same way I am getting with CTCA.

It is costing my nothing but $25 a night for a discounted nice hotel and food for a couple of days. I went to Utah for 2nd opinions and reconstruction in the past. Paid for all of it for the most part....never once had an appointment with a dietitian, discussed chiropractic or acupuncture care or any other holistic options. I have had serious side effects...I can not be treated with the "normal" approach. After 5 days of Tamoxifen, I spent two days in the hospital with fluid around my heart plus many other side effects. After ONLY 5 days!!!

I am going with an open mind no different than if I went to any other hospital. It has to be the right fit for me, and that is all that matters. The fact that a hospital advertising so people know they exist....should not be a reason to disregard them. Due to legal restrictions they are unable to offer certain services if you are on any type of government type insurance. This is not their fault, this is our US governments fault and the blame should be correctly placed as needed. If anyone has factual information and feedback I am all ears.

I leave in the morning and am hoping for the best. I don't know what to expect...maybe the lumps will still disappear. Though I am afraid not...my armpit area has begun to get "tender"... So we shall see.

buttonsmachine

Green Eyes, I know you are in a tough spot and I think it's good to explore all your options, especially since you feel that your local team is not taking your symptoms seriously. As I said before, I have never been to CTCA so I have not direct experience to offer there. However, CTCA has had more than its share of controversy over the years. For example, they are known to turn away certain very sick patients to improve the appearance of their treatment outcomes, and they also turn away patients with less lucrative insurance plans (i.e. some government insurance plans) to increase their profit margin. Those points have always made me somewhat uncomfortable with them.

If you are interested in reading about that, you could start here.

This abstract from Harvard Business School sums it up well too.

This doesn't necessarily mean CTCA is "bad" or provides bad care. And my intent is not to sway you one way or another in your care - where you feel comfortable getting your care is completely up to you! But I do think that one of the main benefits of these boards is that the community can share information that we might not have found on our own. Anyway, best wishes and I hope you get some answers soon, whatever path you might take.

exbrnxgrl

GreenEyes,

Yes, you have heard lots of opinions as that’s all most of us have to offer on CTCA. There simply have not been many members who have used their facilities. Our opinions are not criticisms of your choice, and I for one support each person’s right to make that choice. You don’t need to defend your decision. If you are happy with it that’s all that counts.

GreenEyes81

thank you for the links buttons, I will check them out. And to all I'm sorry if I came across iritated. I did not mean it that way, just wanted to explain the resources at CTCA I just don't have access to in Idaho.

I am curious on the turning down patients part though. My friend is seeing them, she was a very rare lymphoma that other hospitals found and had she not gone may have been treated incorrectly. I am surprised so few on here has gone there though.

I was under the impression they do except government insurance but that the government will not allow them to offer free travel. 🤔

exbrnxgrl

Green Eyes,

When I called, knowing I did not have a “Cadillac “ insurance plan, the first thing I was told was that I would need to put down a large deposit, $25-30 thousand if memory serves me right because they did not accept my insurance. It was a bit amusing as my medical insurance is what 3 out of 4 CA state employees have, so it’s a very good plan. So they do turn down people based on insurance coverage frequently. To some extent, all medical insurers do that, in network, out of network, but CTCA cherry picks more than most, especially since many hospitals are non-profit and they are not.

This article is about 8 years old but outlines some of the concerns potential patients have, even if they have the correct insurance. https://www.reuters.com/article/us-usa-cancer-ctca/special-report-behind-a-cancer-treatment-firms-rosy-survival-claims-idUSBRE9250L820130306

That being said, I hope you can understand why there is not a lot of positive feedback on CTCA on this forum. But... if you are happy and have trust and confidence in your care providers that should be all that counts!