#46880 05-07-2006 06:46 AM | Joined: Jun 2005 Posts: 15 Member | OP Member Joined: Jun 2005 Posts: 15 | Finished 3 chemo and 33 rads. in June of '05. Primary site unknown. Now 11 months later went to ENT on Friday for a check up. He did the scope and said "excellant, everything looks good". I asked about the catscan results, he said that there was two lumps under my chin but they didn't think it was anything. He said it could come from bad teeth, which I have had since radiation.Actually my neck has been a bit lumpy and swollen at times so I sleep with my head elevated to decrease that. I asked about the petscan results next. He hadn't recieved them so he left the room to have them faxed and returned.Then he says that there was activity in the floor of my mouth but that the reading was very low, not high enough to call it cancer. He suggested that I have more lymph nodes removed and have them biopsied. All I could say at that point was that I'll think about it and get back to you. I have been a nervous wreck since then and can't think straight. I need your help to sort this out. Thanks, Barbara
unknown primary, one node,left neck radical dissection, 3 chemo, 33 rads. treatment ended 6-15-05
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#46881 05-07-2006 09:02 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Barbara First come down of the ceiling, (it's the first place we all go) Now I don't think you really need our advice the fact that you are asking is because you know that doing nothing is no choice at all. So get the nodes biopsied, if they come back negative then great all the worry was for nothing. IF they should show some early signs of change you know it makes sense to catch it early so that it can be dealt with quickly. Please get on the phone tomorrow and make the call, do it before your nerve goes girl. Please come back to the forum tomorrow and let us all know what you have decided Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#46882 05-07-2006 12:22 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Barbara, I echo what Helen said. You will not sleep well until you know what is going on. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#46883 05-07-2006 01:16 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Let me be a third voice with the same advice. Remember that PET scans are likely to give false positives and so very likely this is a false alarm but you need to have the biopsy done to be sure of that. Denial is not an effective way of fighting this disease........ Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#46884 05-07-2006 01:44 PM | Joined: Jun 2005 Posts: 15 Member | OP Member Joined: Jun 2005 Posts: 15 | Thank you guys for responding. I just don't know what to do. Anyone here with false activty on petscan? Right after radiation my cancer doctor said there was activity on vocal cords but he said not to fear, said it was normal. Could this be a normal reaction left from rads? What about floor of mouth? If it is cancer again, how could it be treated? More radiation to make matters worse? Surgery to remove what? Is there a quality of life after that? Do you think I should call my radiologist for an opinion? I'll be out of town tomorrow and deal with it the next. Thanks, Barbara
unknown primary, one node,left neck radical dissection, 3 chemo, 33 rads. treatment ended 6-15-05
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#46885 05-07-2006 02:12 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Barbara, those are very good questions to ask your Docs.Be persistant! Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#46886 05-07-2006 05:39 PM | Joined: Nov 2005 Posts: 306 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2005 Posts: 306 | Barbara, The counsel given so far is very good indeed. I'll add my voice too - go and get that biopsy. Remember Rule #1: it ain't cancer till somebody gets a piece of it under a microscope. PET scans are great tools, but they sure seem to give controversial results. A jillion words have been spoken on the forum about PET scans. You worry, as do we all, about the "next" occurance. Get one of your docs to get a piece of it under a microscope. Then you will know. We are with you. Please let us know. Be strong. Tom
SCC BOT, mets to neck, T4. From 3/03: 10wks daily multi-drug chemo, Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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#46887 05-08-2006 04:35 PM | Joined: Oct 2005 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2005 Posts: 126 | Barbara,
As other have already said, the biopsy although scary in itself will allow doctors to find out what is going on to decide on a course of action quickly in the unfortunate event that the results are positive. Plus you will not have piece of mind until you find out what is happening.
Vin
CG to wife; Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005. Dec 2006 tongue surgery, Scar tissue no cancer. Feb 2010 neck node FNA - negative. 2010 ORN right jaw plus fracture 2015 ORN left jaw plus fracture Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube June 2016 Difficulty breathing - Permanent Trachea tube Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020. 15-20 esophagus/larynx dilations
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#46888 05-09-2006 07:24 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2006 Posts: 137 | The more I read about PETscans, the more I wonder. My own PETscan showed "mild hypermetabolic activity" in the upper right lobe of my lung. Went in for a fine needle biopsy a week and a half later, but the contrast ct showed nothing to biopsy.
It seems "hypermetabolic activity" is not always cancer. It could be an inflammatory process.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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