Could lytic lesions be something other than mets? - 1252009

zuzuspetals
Posts:10

My mother, 62 years of age, who has a history of breast cancer (stage 3, diagnosed 11 years ago) experienced some shoulder pain and swelling around the right clavicle after heavy lifting a few months back which lasted a week and resolved. Then, approx. 8 weeks ago it returned again after heavy lifting only this time much more intense and the right clavicle head swelled to the size of a tennis ball. At the emergency room an x-ray and blood work were all fine so the doctor ordered a CT scan because the size of the "tumor" as she described it was worrisome. The CT found a lytic lesion in the clavicle head, one on the illiac bone and one on the sacrum as well as a couple things that they deemed of little insignificance on the report (sclerotic lesion, lymphadenopthy and a 6mmx3mm lung nodule). The report concluded that the 3 lytic lesions could be "mets, myeloma, or other?"

The swelling in the clavicle has since resolved almost completely as had the shoulder pain. An ultrasound of the clavicle showed nothing so a biopsy of a slightly swollen lymph node on the opposite clavicle area was done which also came back clear. A bone scan was performed, though we don't know the results yet. The oncologist called to let her know that in order to confirm what caused the 3 bone lesions that she would need a bone biopsy, which was done and we are awaiting the results.

My understanding is that often times bone mets are diagnosed using only bone scan and another, such as a PET or CT or MRI. She has in the past been diagnosed with degenerative disease in the sacroiliac joint and though not diagnosed, does have obvious arthritis in her knuckles, likely from having worked a physically demanding job in a factory for the last 40+ years. Is there anything else that could be responsible for these lesions? Even the oncologist seemed perplexed as to the fact that her swelling has come and gone and her xray and blood work were clear.

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Reply # - December 30, 2012, 02:25 PM

catdander
Posts:

Hello zuzuspetals, Welcome to Grace. I'm so sorry your mom is experiencing these issues after such a long time. You're right, there are many ways doctors use to diagnose mets. The less invasive the better. But you also want to make sure what's happening. It sounds like since things aren't straight forward her doctor is having to use more invasive techniques to find the answers needed.

I'm not sure our doctors would be real helpful in guessing at differential diagnoses.

We won't have doctors to comment for the next couple of days unless Dr. West is able to access from out of town, but no guarantees.

I hope your mom finds that her tumors are benign and easily managed.
Let us know in the next couple of days if we can help and please let us know too of what is found.
Janine

Reply # - December 30, 2012, 03:15 PM

zuzuspetals
Posts: 10

Thank you Catdander! I guess I am just grasping at this point. The emergency room doctor who ordered that first CT told us that my mom is "full of cancer" and that her "results are an absolute mess!" based on the CT scan, which wasn't so after i had a chance to see it myself. She also went on to say that she didn't believe that it could possibly be mets from the breast cancer this far out, which I know is not accurate as we have been told all along that it could metastasize many years later. The hospital was a very small town hospital and this doctor in particular seemed very freaked out when we mentioned my mom's previous history and it was clear by her comments that she didn't know a whole lot about cancer. It was very upsetting to say the least. She also told us that the xray was all clear and later went on to say that after knowing what she was looking for based on the CT that she might have been able to find the lesions on the xray, leaving us wondering if they were read properly in the first place. Looks like a radiologist never did see or write a report on the xray and just left it up to the ER doctor to interpret.

I have heard that degenerative disease could cause lytic lesions along with some other conditions aside from cancer and was just wondering what they could be. As my mom did 5 years or Tamoxifen followed by 5 years of Femara, I also wondered if side effects from the meds could cause bone destruction. I'm confused as to how there could still be question as to whether or not this is mets after an xray, CT scan, ultrasound, bone scan, blood work, and biopsy. Still hoping for the best but fearing the worst :(

Reply # - December 30, 2012, 05:50 PM

Dr West
Posts: 4735

It's hard to imaging lytic lesions representing something other than metastatic cancer in someone with a history of cancer, but an interval of 11 years is a very long time, so if there hasn't been active cancer in more than a decade, we wouldn't presume anything. I also agree that having something spontaneously improve or resolve that was likely to be cancer is very unlike cancer, so that would lead to a greater inclination to make a firm tissue diagnosis.

It's hard to speculate on various explanations, since it's true that it's hard to envision what might be the underlying diagnosis. However, I hope it turns out to not be cancer...but if it happens to be, we certainly hope to be able to provide helpful information.

Good luck.

-Dr. West

Reply # - December 31, 2012, 05:44 AM

zuzuspetals
Posts: 10

Thank you Dr. West. I am still holding onto the hope that it's something else, but based on all I have managed to read about lytic lesions I won't be too surprised to find out it is indeed mets.

There was something on her initial CT scan report that has me confused. It said:

"Lytic lesion right head of clavicle, soft tissue density. Invades prox. right sternocleidomastoid muscle"

I assumed this meant that the tumor/lesion had spread to the soft tissue/muscle, but when the pre-biopsy ultrasound was done, they told me that "nothing could be seen to biopsy". Did I misread that? Does it not mean that the lesion has spread to the sternocleidomastoid muscle?

Each scan report seems to contradict the last which is why we are still so clueless almost 7 weeks since the discovery of lesions on the CT. I just hope this long wait hasn't allowed this to spread further...

Reply # - December 31, 2012, 01:28 PM

Dr West
Posts: 4735

I can't explain it either, but you're interpreting correctly that the appearance on imaging is that the lesion appearing to originate in the head of the clavicle appears to be spreading and invading into the adjacent sternocleidomastoid muscle.

Though I can understand your concern about progression, it sounds like the interval has only led to the puzzling situation of now not being able to see any lesion to biopsy. So that interval behavior, even if inexplicable, definitively is not suggestive of a progressing cancer.

I hope you get more answers, but if everything suddently appears far better, I'd say that's great, even if it's not something we can explain well.

-Dr. West

Reply # - December 31, 2012, 09:36 PM

zuzuspetals
Posts: 10

Thanks again Dr. West! I imagine that now that the holidays are just about over we will finally get the results of the bone biopsy soon. That should explain the cause of the lytic lesions in the bones once and for all...or so I would hope!

Happy New Year!

Reply # - January 3, 2013, 12:29 PM

zuzuspetals
Posts: 10

Thank you Janine. As of yet there's been no news. The oncologist's office is closed for the holidays until January 7! I had hoped that he would have called anyway as he knows how long we've been waiting and how hard the stress has been on my mom and the family, but so far no call and no way of reaching him. We really don't know what to think and are just hoping and praying for the best while expecting the worst.

I will keep you all posted :)

Happy New Year!

Reply # - January 3, 2013, 02:45 PM

catdander
Posts:

That's a shame they couldn't get that info to you before closing for the holidays. It's very typical to have high stress waiting for news. A good suggestion I've learned on Grace is expect the best but prepare for the worse.
Good Luck

Reply # - January 8, 2013, 06:55 AM

zuzuspetals
Posts: 10

Dr. West,

My mom was just told that the bone biopsy results were negative, which is great! My concern now is that the oncologist wants to see her in a couple of days to "discuss what's next". What could be next if the bone biopsy of the clavicle lesion was negative? Could this still be cancer? I am afraid to celebrate these results prematurely, especially after spending the last 2 months believing she had bone mets or a new cancer.

As an oncologist, what would you think the next step be in her case after a negative core biopsy?

Thank you

Reply # - January 8, 2013, 09:05 PM

Dr West
Posts: 4735

Honestly, I can't say. I'm generally involved only if there's an established diagnosis of cancer. If there's suspicion that there's something there that needs to be diagnosed but was missed, there could be a recommendation to just watch it, to rebiopsy, or even to do a bigger procedure like a small surgery to get a definitive diagnosis once and for all.

-Dr. West

Reply # - January 9, 2013, 03:26 AM

zuzuspetals
Posts: 10

Thank you, Dr. West.
In a case where a person has more than one lytic lesion on a scan, would biopsying one of them be sufficient to confidently declare no bone mets or would each need to be biopsied for a confirmation? The one on the clavicle was the most concerning as it was causing extensive swelling (which is gone), but there was also one found on the sacrum and another on the iliac bone originally. Would it make sense to biopsy the other 2 as well?

Reply # - January 9, 2013, 11:53 AM

catdander
Posts:

If a decision is made to rebiopsy or do a more invasive procedure such as an open surgery then the pathologist or surgeon and oncologist will likely confer to decide which lesion is most accessible or most likely to result in a conclusive outcome.
Certainly a discussion with a trusted oncologist is in order. Possibly a second opinion with a breast cancer specialist at a major research center.
This is a link to a very informative post Dr. Weiss about the many benefits of 2nd opinions,
http://cancergrace.org/cancer-101/2011/11/13/an-insider’s-guide-to-the-second-opinion/

Reply # - January 9, 2013, 12:27 PM

catdander
Posts:

I forgot to respond to your earlier post about the ER doctor who made the 'full of cancer' comment. That is not just useless highly inappropriate and inaccurate information but will have implications so much more far reaching than that doctor could imagine, ssob. My husband still refers to the surgeon's statement of prognosis, so inappropriate and rudely given, the worse part is it still may turn out to be accurate.
I wish y'all could just put that out of your mind but I know that's easier said than done.
Best of luck,
Janine

Reply # - January 9, 2013, 03:30 PM

zuzuspetals
Posts: 10

Thanks for taking the time to reply. Second opinions aren't easily come by and with her oncologist being one of the best as well as the head of oncology at her cancer center, I'm confident that he will be as thorough as he can be. We see him tomorrow and I am armed with a bunch of questions for him and won't be too surprised if he does want to continue to investigate what caused her lesions, though with 2 biopsies already done it would be nice to hear him say that he is sure it's not cancer. Here's to hoping!

I will keep you updated and let you know how it goes.

Thanks again!

Reply # - January 9, 2013, 06:27 PM

Dr West
Posts: 4735

This is such an individual situation that there's no real answer to that. I think you need to discuss it with the doctors involved. I wouldn't want to interject on such a specific case without being directly involved and having all of the information.

Good luck.

-Dr. West

Reply # - January 13, 2013, 05:16 PM

zuzuspetals
Posts: 10

Dr. West,

I am sorry to trouble you again but this situation is just so confusing and frustrating. We met with the onc and he too is perplexed and frustrated with the results. He believes that it is mets showing in the bones on her scans and is frustrated that both biopsies have come back negative. I know that the pathology is going to play a role in her treatment...if they can ever get it! The supraclavicular lymph node is being biopsied again tomorrow and we will repeat the CT scans to see if there has been any change in the lesions in the last 2 months since this started. My mother is willing to have an open biopsy in order to get a confirmation if tomorrow's biopsy and next CT scan don't provide any information.

I understand that sarcoidosis, SAPHO, and a couple of other conditions can also cause lytic lesions that mimic metastatic cancer in the bones. When a biopsy is done like in my mom's case, are cancer cells the only thing they are looking for? Could they be missing some other condition or are any and all abnormalities in the samples considered?

If the 3rd biopsy is negative and there's been no change in the lesions, is there any other testing that I could inquire about when I see the oncologist next?

Thank you.

Reply # - October 6, 2013, 10:58 AM

alta
Posts: 15

hi zuzuspetals,

I am wondering about your mom's lytic lesion since it has been quite awhile.

Was it ever resolved? What was the conclusion?

I am asking because my daughter is in the same predicament right now. She was found to have lytic lesion after her breast cancer diagnosis and the biopsy was benign, but lesion still there unchanged.

Thank you.

Reply # - October 6, 2013, 12:37 PM

zuzuspetals
Posts: 10

Hi Alta,

Unfortunately the lytic lesions were indeed breast cancer that had metastasized to the bones and a couple of lymph nodes. It was not the news we wanted but we were relieved to finally get an answer and get her treatment started. She is responding well to treatment so far! Her lytic lesions are healing and lymph nodes shrinking.

Thankfully my mother's oncologist did not give up or settle for inconclusive or even negative results. He knew what the scans were showing and though it took some time, he pressed on until they were able to confirm it and didn't waste any time getting her on treatment.

It's my understanding from all the research I've done and from speaking to other oncologists that lytic lesions are almost always the result of malignancy in women over 40, and especially with a history of cancer.

I pray for your daughter and your family that her outcome proves better, but if not, know that there is still a lot of life to be lived even with cancer that has spread to the bones. My mother is still very active and shows no signs of slowing down. I have spoken to hundreds of women at http://breastcancer.org as well who are thriving even with mets -- many for over a decade and still going!

Getting a good sample for biopsy from bone is apparently quite difficult. My mom's was finally confirmed through a biopsy of the lymph node after 2 negative bone biopsies. The oncologist was going to start her treatment even if another test came back negative because he said that the scans were very obvious for cancer and confirmation through biopsy was just to make sure it was breast cancer cells and not a new cancer.

Good luck to you and your daughter. Sending hugs and well wishes.

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