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#20326 05-02-2006 03:47 PM
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kanada Offline OP
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I am once again asking for the suggestions and support of you folks on the Board. I was diagnosed with scc of a lymph node in my neck after needle biopsy. Unknown primary after two quadrascopies and many scopes down the nose. Three weeks ago I had radical neck dissection - 40 nodes from side with the lump and 20 from opposide side - also a salivary gland transfer to protect my saliva gland from radiation.

Today I went for my checkup with ENT surgeon and he reported - biopsy came back - NO CANCER in any of the lymph nodes they tested (approx 30-40% of the nodes they removed, including one bigger one they suspected was the bad guy)

What the heck does that mean??? After discussions with the surgeon and the oncologyst - I have opted NOT to have radiation but will be followed up closely with CT scans and PET scans -like people in other posts - I too will likely be nervous about each test.

The surgeon suggested that there are 3 possibilities: 1. that the cancerous cells are in the lymph nodes that were not biopsied;2. that I had cancer and my body cured it or 3. there was a "misdiagnosis" of the two needle biopsies - according to the surgeon a "small" likelihood.

What do I think? Right now I feel like I said all along that I never really thought I had cancer - no risk factors and felt great. At every appointment I asked"are you sure I have cancer" - my sister told me to quit asking that already!!

I really don't know how to process this information - I know it is new information - but I feel like a bride who called off the wedding and I have to give all the gifts back. I know I didn't intentionally fake this illness - I have a scar from ear to ear and swelling like a chipmunk's cheeks to prove it - but I just can't feel overjoyed at the news like people say I should. Was a mistake made, did I go through this for nothing, will this get covered up, can I be assured no one has to go through this again. Of course I want to come to the peace that I made the best decisions I could based on advise I was given from very competent professionals and for whatever reason - the cancer is gone.
Sorry to ramble - thanks for any advise, wisdom...terry

#20327 05-02-2006 04:17 PM
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Hi Terry,
If I were in your shoes, I would want to know if the cancer is in the lymph nodes not biopsied. If there is still cancer present, you want to get it taken care of with radiation. Good luck with this!
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#20328 05-02-2006 04:28 PM
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Hi Terry, what a situation you have! I don't believe anyone has ever come here with your problem. I am in agreement with Minnie If the un-tested nodes are still availible to have them all checked. An unknown primary is not a positive and if a node was at all positive then that is not good either. I believe more sleuthing is in order here. I know you want this behind you but tell them that you need them to solve this mystery before you let it slip into a distant memory.

Keep us posted.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#20329 05-03-2006 11:01 AM
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Hi Terry,

You certainly have a right to be upset and confused.

Some of the things you have posted puzzle me. First of all, what does it mean that they tested 30-40% of the nodes removed? The three possibilities given to you by the doctor(s) are also confusing.

1. If the cancer cells are in the lymph nodes not biopsied, are you supposed to just forget about them. (Like Minnie and Mark, I agree, that this fact cannot be left open ended like this).

2. I am not aware of the fact that a body can heal itself from cancer.

3. The needle biopsies, I believe, can be reread by another pathologist. Is this being done?

It might be time to gather all your records and go for another opinion. Also remember, even though you have no risk factors and you felt fine, that doesn't mean that you didn't have cancer. Many of us can say the same thing.

Brian is away right now, but he usually checks the forum even while traveling. Hoefully he will check in with some suggestions and opinions.

Good luck and keep us posted.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#20330 05-04-2006 05:34 AM
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kanada Offline OP
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Thanks for the feedback. Jerry in response to your submission: 1. My surgeon said it was normal for only a percentage of nodes to be biopsied cause there would have been +60 nodes all mixed up in other tissue and the pathologist would only pick out a sampling. He believes that the node that showed up enlarged on my CT scan (the one needle biopsied) was also checked.

2. He told me that there has been medical literature written of people who were diagnosed with cancer and upon surgery/biopsy - NO cancer. Does that mean a cure or a misdiagnosis.......

3. the Oncologist has told me that he is requesting a review of the needle biopsy report - I need to talk to him further cause I don't know if there are only records or if there is some actual needle aspiration fluid held in storage somewhere.

I have said right from the beginning of this thing - since I was very good at being in denial, if someone screws up, I better find out about it and a medical review be done so it never happens to another person. I am very resolved that I made the right decision to have had the surgery, but it was based on the info I was given. I am also thankful that things happened quite fast for me in terms of treatment when others go undiagnosed for a long time and then have a tougher battle to face.

Believe me - I will be seeking answers.

Thanks again - much appreciated - terry

#20331 05-04-2006 09:57 AM
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Terry,

The pathology office will have your samples on file still. They probably made glass slides and will review those - possibly have another patholgist read them for a second opinion. When I had my surgery - they removed 22 lymph nodes (doc said he got them all - I am pretty small in frame) and the pathologists read a slide on every single one of them. In all, there were 40 pathology slides they read - pieces of my tongue tumor, salivary glands and lymph nodes - one or two nodes to a slide (mine were pretty small). They take a paper thin (actually much thinner than that even) slice and mount it on the slide and read under a microscope. They can mount liquid / fluid specimens in another fashion - but still on slides.

I had mine re-read at another facility for a couple of weird things that came up on my pathology report- but I went and picked them up myself and since I also worked in a lab at that time - was able to look at mine under the scope and see exactly what the pathologists saw - although I'm not trained in pathology /cytology so I couldn't tell healthy cells from cancerous cells.

But - the whole point to telling you is that - I think there are guidelines that they HAVE to keep malignant samples for a certain time frame - and certainly that frame hasn't passed for you. The samples might be in the form of slides though - as pieces of tissue don't always maintain the same aspects over time if not mounted on slides. You should most definitely be able to get a second reading - now whether or not the insurance will pay for that second reading or not is another whole issue.

Good luck and I hope for your sake that they were really cancer free - even though you had the procedures done (you can't unfortunately change that fact)- you wouldn't have to worry about recurrence or further treatment.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
#20332 05-04-2006 12:36 PM
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I understand they keep sample of malignant tumors ten years -- however they said your were not malignant so (!?)...

I would definitey get a second opinion on the pathology. Send to one of the top HNC CCC such as Sloan-Kettering, MD Anderson or Johns Hopkins. This is an easy matter, or should be, it is done all the time. Barry's tissue samples were at a local hospital where his tonsillectomy was done, they sent their original slides to Hopkins and cut new slides for the second opinion at Sloan. All the pathologists agreed exactly but that is by no means universal. I have a friend who had prostate cancer biopsy slides read by three pathologists: local lab, "no cancer"; Walter Reed, cancer but too small to grade; Hopkins (top PC pathologist) -- Gleason 6 adenocarcinoma. Not the best news but it told him what to do.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#20333 05-04-2006 01:20 PM
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They also have to keep non-malignant samples - but I don't know if they ahve to keep them as long as malignant. I do know it is longer than a few months. So, they should be there regardless of if they are labeled malignant or benign.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
#20334 05-05-2006 07:21 AM
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kanada Offline OP
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Again, thanks for the posts - I have booked an appointment with my Dr. (oncologist) for next week to see what his answers are to the questions you folks have responded to. Today I am feeling so emotional - people are saying YAHOO, but I have such a feeling that the other shoe has not dropped. The Dr. has not cancelled the radiation appointments yet as he wants to hear back from the review of the initial slides (needle biopsy) that said I have cancer. From the info you all have provided, I think I should be asking to read the pathology report from the radical neck dissection biopsy of the nodes to see for myself how many nodes were checked!! To let you know - I live in Alberta, Canada so luckily everything is covered by our provincial health care - cost wise. And my treatment is at the Cross Cancer Institute (surgery done at the University Hospital) Thanks again for the leads.terry

#20335 05-23-2006 02:59 PM
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Hi Terry,
I don't think this should change anything you intend to do, but I had a surgical biospy of the one node where I felt the lump and it came back SCC. When they did the neck dissection they found no cancer. I too questioned if there had been an error and was told that the original sample had been sent to the best lab in the US. Doesn't mean someone didn't mix up the samples. Anyway, my diagnosis was SCC with unknown primary. They recommended radiation which I had. Keep pursing it if you think there is a screw-up.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I

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