Diagnosed Metastatic By Scan Only or Confirmed With Biopsy?

DivineMrsM · July 2016

I would like to know if there are others like me. After learning I had a malignant tumor in my breast, I saw an oncologist. She ordered a bone scan and when that cam back with suspicious signs of possible spread of breast cancer, I was sent for a PET. The PET confirmed metastatic cancer to the bones, in my hip, ribs, scapula and dotted through the spine.

The oncologist never sent me for a bone biopsy.

I had chemo, lumpectomy, radiation and have been taking Arimidex since then and been stable 5+ years.

Are there others who did not have a biopsy of the cancer that spread? Were you just diagnosed with mets via a scan?

I've had a disability doctor question that I had metastatic breast cancer because I have had no progression since being diagnosed. "Women with metastatic bc only live 3-5 years" , he said. And yes, he seemed very much like a quack and I explained I knew many women who've lived longer with the disease.But I was turned down for school employee disability payments even tho I already qualified and was approvedfor Medicare based on my medical/doctors reports.

So this quack doctor has placed a doubt in my mind since I never had a bone biopsy. Yes, I'm a little freaked out about all this. I am not sure what to think or do.

dtad · July 2016

Hi there. Did you have the breast tumor biopsied?

DivineMrsM · July 2016

Yes. the breast tumor was biopsied and found to be hormone positive, her2 negative, invasive lobular carcinoma

I have written copies of all my scan reports.

The tumor measured 6.9 X 4.3 X 1.8 cm on an MRI.

annieoakley · July 2016

Divine, how often are you scanned? Do the metastatic sites still show up but just without progression? I was diagnosed metastatic without a bone biopsy as well but my MO said when there's more than one area it's definitely a metastasis. It was questionable for me at first as there was only one area that showed in my sternum.

DivineMrsM · July 2016

I was having PET/CT scans twice a year up to May 2014. Then insurance refused to pay for PET, so I started getting whole body bone scans and CT scans twice a year. Looking at the reports, especially with the f PET scans the first couple of years, the metastatic sites continue to show up although they are shown to decrease once I had chemo and then remain stable.

annieoakley · July 2016

Divine, we rarely use pet scans at our cancer centre, only bone and CT. But from what you are saying it appears the chemo had a great impact on the cancer and the Arimidex is keeping you stable! This happens quite often so I'm not sure why your doctor is questioning your diagnosis. A women at our cancer centre has been stable for 10 years on an AI alone and a bone biopsy confirmed her diagnosis

LindaE54 · July 2016

I was originally dx'd stage IV de novo with a biopsy of axillary lymph node. Bone scan and CT scans confirmed multiple bone mets and tx was started on that basis only. A few months later a biopsy of femur was done but only because I had a rod inserted.

DivineMrsM · July 2016

Annie, the quack doctor is one I was sent to by the disability board. I am sure he looks for whatever reasons to disqualify me because the board does not want t pay out any money. He rules in their favor because he is hired by them.

Thank you for telling me about the woman who's been stable for 10 years on an AI. I, too, feel I am having an exceptional response to treatment for,which I am grateful.

annieoakley · July 2016

Divine, it's appalling the lengths they go to in order to not pay out. I had a similar situation when I was diagnosed with MS, very frustrating and exhausting! Wishing you continued stability for many many years. I want to be like you and the woman at our cancer centre, it gives me alot of hope. Sending positive thoughts that it all works out for you.

Kjones13 · July 2016

wow! What a jerk! So he is a dr that the state of Ohio uses for disability review? Is it possible for your mo to submit a response (my mind is going blank on the word) to argue the quacks decision? Appeal! There we go...I'm sorry he is being such a jerk, but regardless you have had a great response to treatment! So many stupid hoops and red tape we have to go through.

For me, I had biopsy of liver o confirm mets. The spine was weird. My mo did send me for a biopsy but it came back negative. The spot was on the inside next to the spinal column. So we think the doc doing the biopsy may not have gotten to it. The spot has responded to treatment so my mo does think it's cancer.

Not sure though in your case that a biopsy was needed. Were they supposed to cut you in every spot you lit up? That's craziness. The scans showing a response to treatment should be enough "evidence," right? How frustrating

susan_02143 · July 2016

I did not have any biopsies to confirm mets. And, in some hopeful moments, I too dreamed that maybe this was all a mistake. But you know, scans are pretty clear and doing a biopsy in that location was not medically suggested. And, after 5 years of success, any hopeful dreams of my noted progression not being mets were dashed when it was found in my bones.

Biopsies are not really standard practice for many tumors since the damage done and pain inflicted by that procedure are simply not warranted.

*susan*

cive · July 2016

I have not had a bone biopsy although I have been diagnosed with bone mets and am being treated for them. I also have lung mets that were confirmed by an analysis of pleural fluid, but no biopsy. I just get regular (every 6 months) contrast CTs.

Becs511 · July 2016

My doctor originally assumed I was stage 3, but ordered a pet-scan for the day after we met just to confirm, and I am so glad she did. She called me that night and told me that they found it had spread beyond my breast and lymph nodes and into my lungs and sternum. They biposed my original breast tumor (triple positive) and then biopsed my sternum to confirm it had the same pathology, which it did.

I was NED for a while (like 3 months) and then a tumor in the same breast light up again so they biopsed it again. It was triple negative, so while I stay clear from the neck down in February I was diagnosed with brain mets. And since you can't really biopsy the brain, we are just assuming that they are triple positive, since they go upstairs more often. However, I am still being for both cancers.

DivineMrsM · July 2016

I appreciate all of your insights. The thought that, oh my goodness, could this have been a misdiagnosis? popped into my head and started confusing me. It played in my mind, too, Susan, that maybe it was a mistake and if so, how would I approach life after living under a metastatic cloud for five years? So to know of others diagnosed through scans and not necessarily biopsies helps calm the confusion.

exbrnxgrl · July 2016

Sometimes, biopsies are simply not feasible. That doctor seems rather ill informed, but "just say no" appears to be his job. I had a bone biopsy which was neither painful, nor damaging due to it's location, however if a biopsy had posed any difficulties, I'm sure it would not have been done. Yes, it provided proof positive of metastasis and confirmed that the hormone profile matched the breast tumor, but it was done because the biopsy itself was easy to do. I just hit the 5 year mark on AI's, and rads to the met, only. There are exceptional responders and outliers

DivineMrsM · July 2016

Dr. Quack actually said he didn't think I ever had mbc. He said this without looking at any of the scans I brought him on CD (I was required to bring them) or looking at any written reports on the scans. He asked me if I had them, I did not, I was not instructed to bring them. I'd signed a release for medical information prior to my going to the appointment and thought all that info,would be sent to him prior to my appt. I must say, it was an extremely stressful appointment.

I guess I will have to appeal and maybe see if a lawyer can advise

exbrnxgrl · July 2016

You know that I'm usually not snarky or sarcastic but... Wow, Dr. Quack must be very gifted to be able to know so much about your health without your medical records 🙄.

ShetlandPony · July 2016

He called you a liar to your face. So that means you may challenge him to a duel. I'll be your second. But seriously, this would stress me out, too. Like you, I had a breast biopsy only. The doctors (major cancer center) deemed the liver PET-CT sufficient, and said it would be too risky and unnecessary to biopsy the liver tumors which were found at the same time. Two thoughts: If the appeal letter is from a doctor at a big-name cancer center that might carry weight. And maybe the hospital oncology social workers can refer you to the right legal help. Oh, and never assume your medical records will be properly forwarded or read.

Kandy · July 2016

Mrs Divine, I am wondering how your policy is written about being disabled. Is it if you can't do your current job or does it state any job? I had this to happen with a life insurance policy from my employer. My oncologist wrote a strong letter stating he didn't know any employer that would hire me. I was still denied. We fought it for 1 year. To make it more amusing they determined I could work even with my acetabulum fracture. Right before I had my major surgery they decided that may be I couldn't work. It took all the way to the last appeal to win. I think they thought I would take them to court and I would have. It was very nerve wrecking, shame they put you through all of that. I hope this works out for you.

Tee510 · July 2016

i only had a bone scan, mri, and ct scan. The results stated spots to numerous to count and Mets on upper and lower spine, left rib, and hip/ pelvic area. I have never had a bone biopsy. That put me in doubt for a while because I also have hyperthyroid which also causes different bone problems. Boy do I wish that was the truth for me. Shame on them for treating you like that. Just because you are stable doesn't mean you don't feel like crap from side affects from all the meds. Before I started treatment I felt fine and worked. Now I'm on treatment and barely want to get off the couch.

Cafelovr · July 2016

Wow...what a thunderbolt. I had a bone scan, PET, and CT Scan. My liver lit up on the PET, so I had a liver biopsy that confirmed mets. MRI measured 16 mm and breast tumer was 11 cm.

Fitztwins · July 2016

As much as I trust my doctors and scans, I just recently was diagnosed with mets in my femur (by the way of bone scan and MRI) an Orthopedic Oncologist didn't believe he, when he did surgery to insert a rod into my femur and did a biopsy (record it too) the biopsy came back with NO Cancer! I avoided rads and change in treatment!!! phew and a major progression.

So I am on the "always do a biopsy" camp. I did have a biopsy at my initial dx of mets.

I believe that 95% of the time the scans are correct...but not always..I am here to tell the story.

HLB · July 2016

I've had bone mets for 4 yrs and never had a bx. Original cancer was 2004. Ca27-29 went up so a scan was done and mets were found. Treatment resolved them so that was proof enough. I've since had some progression. I wish I could k ow the pathology after all this time, but it's contraindicated. Mostly in spine but now ribs and pelvis. That quack is pissing me off!

dlb823 · July 2016

I didn't have a bone biopsy. One was slated to happen after an MRI to decide the best site to do one, but I ended up in the ER with a fractured femur two days before the MRI was scheduled, and my ortho surgeon sent bone from my surgery for a path.

That disability doc sounds like a real piece of work! I doubt you were misdiagnosed. He just got you on a technicality I think an appeal demanding a review of your medical records should be able to overturn. I also truly believe his survival stat is outdated. Just put together whatever is needed to appeal, and don't let it stress you out. I can't imagine you won't win your case on appeal.

Also... I have been meaning to look for updated survival stats. I'll make that a priority now and post what I find. Tired of the 2 to 5 year stuff still being repeated years after the advent of important newer drugs.

Bestbird · July 2016

As so many have said, the disability doctor is looking for ways to deny you coverage.

Indeed, there are exceptional responders (as we've discussed offline).

To my mind, the most definitive proof that you had mets, and it appears to be ironclad, is your statement, "Looking at the reports, especially with the f PET scans the first couple of years, the metastatic sites continue to show up although they are shown to decrease once I had chemo..."

zarovka · August 2016

With disability determinations, its all about who has the most appropriate expertise. If the disability doc is not trained as an oncologist, he cannot over-rule the determination of an oncologist. If he is an oncologist, but not a specialist in your type of cancer, he cannot over-rule the specialist. I suspect you have been evaluated by people with more letters after their name than this doctor. That really should put an end to it.

After my scans showed metastasis to the liver and before I was waiting for the biopsy, I asked the radiologist if there was any hope that I did not have cancer. He said no. The only question was whether the metastasis was different from the primary cancer. At least with the liver and in some cases, they believe they can tell from the scan. I don't know about bones, but I suspect your doctors know what they are doing.

>Z<

DivineMrsM · August 2016

Thanks for all your replies. I appreciate it. Kandy, for me, it is if I am able to perform the current job. Your story of dealing with your insurance company sounds more than frustrating, but glad you finally got it ruled in your favor.

Fitz, I can understand where you're coming from. In hindsight, I would have requested a bone biopsy.

The medical examiner I went to is an oncologist. But he's some wacko in a small clinic in Canton, Ohio with his name all over everything. I'm not even sure how to explain it, but it was quite a contrast to where I get treated. I receive my medical care from Allegheny General Hospital in Pittsburgh, PA at their Cancer Center. My own local gynecologist referred me to them, even tho the hospital he is affiliated with in my area has a small town cancer center, because he said the Pittsburgh hospital deals with much more volume of patients and would know better how to treat me. I am thankful for the referral because I do not know if a local place would have sent me for an initial bone scan which was followed up by a PET after suspicious areas showed up. Dealing locally may have meant I might've been dead by now. A sobering thought!

Diagnosed Metastatic By Scan Only or Confirmed With Biopsy?

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