Help - Unknown Primary Even With Biopsy, Pet/Ct Result

Hi everyone,

 I've been lurking around this site for years when my mom, who passed away a year ago of lung cancer, got very sick. Thanks for all of your invaluable cancer info and first hand experience firstly.

 Two weeks ago something devastating hit our family again...my only sister who just gave birth 5 months ago, developed a left neck lump. She did a needle biopsy(which we were told is ~ 90% accurate) that came back fatty tissues. Then she had it removed regardless and the surgeon had the lump sent to pathology. First report came back negative. But a week later we were told that the original report was wrong and that the follow up test/stains they ran supports the diagnosis of Metastatic Carcinoma of Unknown Primary.(squamous cell carcinoma)

We were then referred to a ENT doctor who took 2 samples from inside of the nasal for biopsies purposes in his office; first one came back "supspicious" while the 2nd one came back negative. 

The next procedure we did was a whole body Pet scan + CT of the Head and neck,  chest, abdomen and pelvis. Now here are the results that are really bothering us and confusing:

 The whole body Pet had 4 hot spots lit up, one near the posterior naso-and oropharynx, "likely representing post-biopsy inflammation", SUV 3.5.  Second hot spot was in the area of where the neck lump was removed, SUV 2.2.  Third spot was near the midabdominal focus(retroperitoneal lymph node?) with a peak SUV of 4.2. The last hot spot was near the right external iliac lymphatic station and right acetabulum with hypermetabolicuptake SUV of 7.2 - 14.2 (very high we were told)

CT scan did showed the abnormal lymph node around the neck, but NOTHING in the chest, abdomen, and pelvis area. All organs were clean from the CT.

 Now we also did a colonoscopy and the dr. did not find any tumors, but "mild infection with the likelihood of granuloma" inside of her colon.

We just got back from her oncologist this Fri and we were told that this is probably a late stage Head and Neck Cancer case. He recommended my sister to have Carboplatin asap as palliative treatment. I politely asked the doctor that is there any slight chance that the 3rd and 4th hot spots could be due to infection/inflammation and that the Head and Neck cancer was still localized in the upper neck area(since CT did not find any enlarged lymph nodes below the chest area), and he said No Chance because the SUV uptake values are too high and that this is a "very aggressive" cancer. He said radiation treatment, which I thought was the primary treatment for many Head and Neck cancers, is useless in my sister's case because the cancer has already spread.

I guess my question is: if the cancer did spread to the lower body lymph nodes, would they show up in the CT scan similar to where the radiologist found in the upper neck area?

I just want my sister to have the best treatment option possible for whatever she's dealing with...and she's showing absolutely no signs of being sick except for the enlarged neck lump that was removed. Also, would the delivery of her baby(C-section) 5 months ago have anything to do with the high Pet FDG uptake? One last puzzling thing is that months ago she did develop an enlarged lymph node near her right groin(near where hot spot #4 was seen in Pet) but it went away completely. Does that mean her body is constantly fighting some kind of low-grade infection since cancerous lymph nodes usually don't go away? Her doctor does not seem to think so though, even with the colonoscopy report suggesting possible granuloma in her colon.

I want to thank everyone for any possible input in advance. I'm really not looking  for anything to support my own "wishful think" theories here, but just want to see if anyone had seen any Head and Neck cancer case(s)  in which teh primary tumor cells could  metastasize to the lower body Lymph sites whose presence could not be detected by Ct scan. 

Thanks everyone again and I'm grateful to have the opportunity to be a part of this community. I wish everyone and their family the best health and happiness.

Kenny

my boyfriend was diagnosed last fall with head and neck cancer - unknown primary...two tumors in his neck, stage IV.  his PET scan showed uptake in his chest but it wasn't a concern.  my advice would be to get a second opinion - that is what we did.  we are fortunate to be only an hour from boston's dana farber cancer institute.  he had the first half of his treatment there (clinical trial) and the second half locally under the guidance of his doctor at dana.  he had a very good response for treatment (radiation and chemo)

stay positive and come here often for support

~meesh

Hi Meesh,

Thanks for sharing your bf's experience with me, it's truly appreciated. I was just curious and I hope you don't mind; but why wasn't the Pet uptake hotspot in his chest a concern? Did the radiologist did a biopsy to confirm that it wasn't a malignant tumor?

Thanks,

Kenny 

we were told that there is often uptake in the chest - often from benign nodules or a recent infection...he recently had his first post treatment PET scan and it showed an area of concern on his spine and his prostate.  he wrenched his back vomitng during treatment and they think that is what made that light up - he had a PSA test to check out his prostate and it came back normal...he will have another scan next month to keep an eye on things.

evidently PET scans can show false positives and there is a real art to reading them.

i am happy to answer any questions you may have.

~meesh

Hi Kenny

My diagnosis was pretty clear cut but I still went for a second opinion.  With the questions you have and hearing it is "probably" late stage head and neck cancer would prompt me to run, not walk, to another oncologist for a second opinion.  This is a very important decision and your sister needs to be assured that she has been diagnosed properly and the best possible treatment recommended. 

Diana

My husband's biopsy of his lymph node came up suspicion of squamous cell carcinoma.  All his doctors (ENT, Head & Neck surgeon,med onco and rad onco) said it was 99% tonsil cancer spread to the lymph node.  They would not radiate until they knew 100%.  His surgeon took another tonsil biopsy and it came back positive.  After that we still went to one other head & neck surgeon who his cousin went to, just to get a second opinion.  He agreed with the diagnosis and treatment. 

This will be the most important diagnosis for your sister so I would definitely get another opinion.  The doctors like to see the CD of the PET not just the report.  So I would get a copy of it from the lab it was done at and bring it to the other doctor.  A second opinion could never hurt.

 God Bless you and your family,

Carol

On 7/20/2008 Kenny C wrote:

Hi everyone,

 I've been lurking around this site for years when my mom, who passed away a year ago of lung cancer, got very sick. Thanks for all of your invaluable cancer info and first hand experience firstly.

 Two weeks ago something devastating hit our family again...my only sister who just gave birth 5 months ago, developed a left neck lump. She did a needle biopsy(which we were told is ~ 90% accurate) that came back fatty tissues. Then she had it removed regardless and the surgeon had the lump sent to pathology. First report came back negative. But a week later we were told that the original report was wrong and that the follow up test/stains they ran supports the diagnosis of Metastatic Carcinoma of Unknown Primary.(squamous cell carcinoma)

We were then referred to a ENT doctor who took 2 samples from inside of the nasal for biopsies purposes in his office; first one came back "supspicious" while the 2nd one came back negative. 

The next procedure we did was a whole body Pet scan + CT of the Head and neck,  chest, abdomen and pelvis. Now here are the results that are really bothering us and confusing:

 The whole body Pet had 4 hot spots lit up, one near the posterior naso-and oropharynx, "likely representing post-biopsy inflammation", SUV 3.5.  Second hot spot was in the area of where the neck lump was removed, SUV 2.2.  Third spot was near the midabdominal focus(retroperitoneal lymph node?) with a peak SUV of 4.2. The last hot spot was near the right external iliac lymphatic station and right acetabulum with hypermetabolicuptake SUV of 7.2 - 14.2 (very high we were told)

CT scan did showed the abnormal lymph node around the neck, but NOTHING in the chest, abdomen, and pelvis area. All organs were clean from the CT.

 Now we also did a colonoscopy and the dr. did not find any tumors, but "mild infection with the likelihood of granuloma" inside of her colon.

We just got back from her oncologist this Fri and we were told that this is probably a late stage Head and Neck Cancer case. He recommended my sister to have Carboplatin asap as palliative treatment. I politely asked the doctor that is there any slight chance that the 3rd and 4th hot spots could be due to infection/inflammation and that the Head and Neck cancer was still localized in the upper neck area(since CT did not find any enlarged lymph nodes below the chest area), and he said No Chance because the SUV uptake values are too high and that this is a "very aggressive" cancer. He said radiation treatment, which I thought was the primary treatment for many Head and Neck cancers, is useless in my sister's case because the cancer has already spread.

I guess my question is: if the cancer did spread to the lower body lymph nodes, would they show up in the CT scan similar to where the radiologist found in the upper neck area?

I just want my sister to have the best treatment option possible for whatever she's dealing with...and she's showing absolutely no signs of being sick except for the enlarged neck lump that was removed. Also, would the delivery of her baby(C-section) 5 months ago have anything to do with the high Pet FDG uptake? One last puzzling thing is that months ago she did develop an enlarged lymph node near her right groin(near where hot spot #4 was seen in Pet) but it went away completely. Does that mean her body is constantly fighting some kind of low-grade infection since cancerous lymph nodes usually don't go away? Her doctor does not seem to think so though, even with the colonoscopy report suggesting possible granuloma in her colon.

I want to thank everyone for any possible input in advance. I'm really not looking  for anything to support my own "wishful think" theories here, but just want to see if anyone had seen any Head and Neck cancer case(s)  in which teh primary tumor cells could  metastasize to the lower body Lymph sites whose presence could not be detected by Ct scan. 

Thanks everyone again and I'm grateful to have the opportunity to be a part of this community. I wish everyone and their family the best health and happiness.

Kenny

 

 

 

 

If she is not currently being seen by a Comprehensive Community or NCI Cancer Center (CCC) I would recommend it.  They follow established diagnostic guidelines and a multidisciplinary team approach to arrive at a treatment plan.

Meesh, Diana, Carol, Don_B;

 THANK YOU all so much for the kind advice.

We did went for a second opinion yesterday, and this second oncologist said that he disagreed with the primary doctor's treatment plan in that radiation should be used to the primary site, chemo for residual cancer cells. He also said that if my sister did have nasopharygneal carcinoma we should be more optimistic about it, as he has treated many patients in the past with approx. 50-80% cure rate. No matter what the outcome, this definitely gives my sister a whole different mindset...and I think with a positive mental state it could only help her when receiving her radiation & chemo treatments. Lastly, he also asked my sister for another blood test that are specific markers for this kind of cancer, to increase the chance of getting a final diagnosis before deciding what treatment is suitable for her.

Now I understand why I should RUN, not walk, when hearing the first doctor's "probable" diagnosis and prognosis. It's kinda of disappointing to see some(not all) doctors who would treat their patients with a shotgun approach, even with test results supporting otherwise.

Thank you again for helping my sister out here I really appreciate it. Best to all of you and yours.

Kenny

Hi Kenny

You sound as if the second oncologist has left you and your sister feeling more optimistic which I agree will help immensely in fighting cancer. 

Once someone earns the right to use doctor before his name, we sometimes lose sight of the fact that some graduated at the top of their class, some at the bottom of the class, and the majority somewhere in between.  We all want one that graduated at the very least somewhere in the upper section - but no one tells us that he/she is Dr. --- and he/she graduated 416th out of 420 in the class.  I think my FORMER primary care doctor graduated 420th out of 420.  I had a doctor in emergency care on a Sunday ask me if anyone had ever told me I had an extremely enlarged left tonsil.  I went home and looked in the mirror at the back of my throat and could see a mass that took up half of my throat.  I went to my primary care doctor a few days later and he looked in my mouth and said absoltely nothing.  Thank God he did give me the referral to a cardiac doctor that I asked for because when I went to her she asked me to open my mouth and said "We need to get you to an ENT immediately and they may want to biopsy that."  I was in surgery and diagnosed w/ SCC of the left tonsil less than a week later.  My diagnosis was clear cut ONCE I got to the ENT but I still went to two different cancer centers for treatment assessment.  They were close but I chose Cancer Treatment Center of America for various reasons.  One - the machine they used is called TOMO Therapy which after research I believed would give me the least permanent side effects.  Second - they treat the "whole" body - nutrition, naturopathic, mind-body, etc.  I even tried acupuncture for a sever nausea I experienced w/ chemo.  Third - even though the first facility tried to talk me into going there by telling me their radiation therapy was as good as TOMO (called Trilogy - after research I found it is better for radiating an organ that moves - like our lungs) and that CTCA was only out for more money by charging my insurance company for 2 treatments a day.  When I asked CTCA about 2 treatments a day versus one they said it lessened the amt of radiation being directed at one time and helped reduce the side effects.  It made sense to me and sometimes you have to go with what makes sense to us as the patient. 

If you aren't completely satisfied w/ your second oncologist don't hesitate to get a third opinion.  Time is of the essence but not only the diagnosis but the treatment can affect your sister's health for life.  We owe it to ourselves to have the very best. 

Kenny, please keep us updated as to how your sister is doing - and please tell her that she has many prayers being sent from here. 

Diana   

Hi Kenny,

glad to hear your 2nd opinion was optimistic.  this is a curable disease, the cure isn't easy but the alternative is worse.

keep coming here for support and with questions...and read past posts.  it sure helped us through the last 8 months.

~meesh