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Distressing news (anxious on timelines)

ac
Posts: 84
Joined: Aug 2008

hi,

I recently discovered a lump in the right of my neck in July. I went for CT, PET and fine needle aspiration. The fine needle aspiration confirmed (poorly differentiated squamous cell carcinoma). I previously had colorectal cancer in 2008 so it was devastating to hear this news again. I hear that this cancer is aggressive and now feel that the doctors (ENT specialist not cancer doctor) are moving too slowly.

I just want to know if I'm moving fast enough to beat this. It's been almost 2 months since I discovered the lump on my neck. Can you please tell me how much time between when you knew of cancer (I don't mean official staging/clinical diagnosis) and when you started treatment?

Also, who normally does the clinical diagnosis and/or staging? The ENT specialist or the cancer docs? I remember the cancer docs (not the gastroentrologist) clinically staged my colorectal cancer. My ENT specialist wants to biopsy my nasopharynx. I'd really hate to have the ENT specialist waste time on further tests on the suspected primary site when I already know that the cervical lymph node tested positive for cancer. I have not seen a head and neck cancer doctor yet.

Thanks very much.

KTeacher
Posts: 1104
Joined: Jan 2011

I personally would get to a cancer specialist. Where do you live? You have already gone through cancer treatment, check to see about Head and Neck doctors in that area. I also have poorly diff. squamous cell with spindle cell variant. Last summer it was found in my upper lip, once diagnosed things moved quickly--I was sent to Stanford. (lump had been in lip for more than a year) I had surgery and radiation. New lump found in June in neck. It took June and july to get diagnosed--PET Scan (negative!) had a biopsy--cancer. Surgery within weeks (neck dissection) one lymph node c, 14 removed, salivary gland removed and some nerves. Glad that you found this site. So much info.

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

From the time I discovered my swollen lymph node to CT was about 4 weeks, I had a PCP visit scheduled so I decided to wait until the visit to mention it. . (Results of CT looked like possible SCC) Waited a week for an ENT visit and another week for surgical biopsy of throat and 3 days for Pathology report. (Definitely SCC of the valecular region) Scheduled second opinion with Head & Neck Rad/Oncodoctor which took another 10 days. Elected to be treated at major university (Shands)cancer center which started another 10 days out. Had a couple of visits for mask fitting and other pretreatment analysis, swallow study, blood work, dental evaluation, etc. Then 6 weeks concurrent radiation with weekly erbitux.

Now almost 18 months post and I've got something suspicious going on again in my throat. At last ENT visit his probing of my tongue caused some minor blood show up in mucous I spit out. That was on the 8/15 and I'm waiting for my Rad/Onco doc to get back to me with his opinion on next step to take. I'm figuring, either a CT/PET scan or just go with another biopsy to see what the cells say.

The waiting and not knowing really sucks. I'm hoping that the delay in days doesn't hinder the successful treatment in both of our cases.

Wihing you well, keep us posted on your progress.

Ed

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

I would get to an ENT oncologist. My husband had a CT at end of May, scheduled to see ENT the next week who told us to contact Shands cancer center and to be aggresive because time was of the essence. Shands did not accept our insurance so we called Insurance company for list of covered cancer centers and decided on Florida Hospital Cancer because it was close to our home. When I called they had a coordinator who set up ENT oncologist, radiologist, dentist, PET and biopsy all within a week. The mass was 4 cm on the CT so they did not need to confirm the diagnosis with the biopsy except for staging and insurance requirements. The only delay we faced was having his gums heal from tooth extractions which delayed it by 2 weeks. This is a fast moving cancer and I would be very agressive with it.

Praying for a completye recovery and quick action.
Debbie

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

What a pain

jim and i's picture
jim and i
Posts: 1788
Joined: May 2011

dang triple post

ahamric's picture
ahamric
Posts: 92
Joined: Jun 2011

From the time we knew for sure what it was and the time the Dr removed was 3 days the first time,and 5 days the second. I believe the dr moved so fast because of the rate that it was growing inside my husbands tongue. Just remember every situation is different and good luck.

Fire34
Posts: 363
Joined: Feb 2010

AC
Mine was the same on the right side of my neck. The quacky ENT did biopsy's in May and didn't get results back until middle of June 09 went to U of Chicago in July and started treatment in Aug. I was stage IVa HPV+ I am of course biased towards the university setting
After the treatment I received from that first ENT I would not let him touch me again if he was the last doctor on Earth. Get somewhere they have the experience. The University staged mine.
Wishes & Prayers on your upcoming treatment, you beat the beast once you can do it again
Dave

Skiffin16's picture
Skiffin16
Posts: 8286
Joined: Sep 2009

My ENT has been the lead for me from the start...

I saw him on January 2, 2009 after having some minor irritation for a few months that my GP didn't really help much with past antibiotics.

My ENT saw me on January 2nd, a Friday. After scoping me, sending me for a CT he was sure that I had SCC Tonsil Cancer...a lump had popped up between the start and seeing my ENT also. on the same side (right).

He took the tonsils out that following Monday, three days...did a quick biopsy and confirmed and staged it as STGIII SCC. The tissue was sent out as he felt me being a non-tobacco user it was probably HPV+ related also...it was.

I took about a month for the port to be installed, tonsils heeled up and to get the treatment team inplace.

My ENT arranged all of that within the same medical facility that I have - Lakeland Center for Cancer Care & Research - Lakeland, Fl.

He chose the Chemo-Oncology-Hematology MD, and the Radiation Oncology MD...

Totally of sixteen weeks of chemo - chemo/rads...no evidense of disease since June2009, all scans have been clean for the most part.

He saw me evey 3 months for the first year, every 4 months the second and now I'm on a 6 month schedule with him and my chemo MD.

Best,
John

Hondo's picture
Hondo
Posts: 6643
Joined: Apr 2009

Sorry to hear that you are going through this again, but don’t despair some of us here like me have been there 3 times and are still around to help others like you. My ENT first found my C all three times and he was the one who directed the Oncal man. From there the oncal man did everything else with Rad and chemo.

Not sure where you live but if you can get to one of the major cancer institutions like MD Anderson, Mayo clinic or something, there you will get the best help and answers to your questions.

Wishing you the best
Hondo

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

I found my swollen lymph node 10/9/08. I really didn't think it was anything to worry about, because I had swollen lymph nodes before. I went to my primary doc in November. I knew I was in trouble when mega doses of antibiotics did nothing, and my lump just got bigger. ENT in early december. Fine needle biopsy showed SCC. I also had a CT Scan. They also scheduled a pet scan, trying to find the primary. The only thing that lit up was the mass in my neck, that we already knew about. Meanwhile, we were at the end of December already. I just wanted that thing out of me. The swollen lymph node was now the size of a large lemon. They scheduled exploratory / biopsies in my lungs, larynx, naso pharynx etc. They didn't find anything. So, they kept me over night and did my neck dissection the next day. January 'o9. They took 23 lymph nodes and my left salivary gland. Three lymph nodes were positive. I did have clean margins. SCC stage 4 unknown primary. I had 30 radiation treatments from 4/06/09 - 5/15/09.

ac
Posts: 84
Joined: Aug 2008

I just want to thank everyone for responding and providing valuable advice. I'm just thankful that didn't have the additional stress of dealing with hurricane damage at my house. My thoughts and prayers go out to all dealing with Irene and in your personal battles.

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