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#17889 07-07-2005 05:52 AM
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JAM Offline
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O.K so now we all want to come sit on your deck. 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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#17890 07-07-2005 07:01 AM
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I just heard from the surgeon with bad news on the path results

He said there were 3 nodes positive (of the 59 removed)

He also said that there IS perinural involvement (whatever that means), AND angiolymphatic invasion (again, not sure what either of these means EXACTLY), so I said..."that sounds bad.."

He said.."No, VERY bad..."

I asked about the cell differentiation and he said it looks like "Moderately Differentiated", which I am guessing is Grade II.

He said the path DID confirm clean margins at least on the primary.

So much for a beautiful day!!

:-(


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17891 07-07-2005 09:13 AM
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Right lets stay positive.
Clear margins are good, 3 out of 59 is good, so hang on to the good side, thats what I'm doing at the moment, so I will light a candle for us both tonight...
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
#17892 07-07-2005 09:38 AM
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tell me what's new with your struggle Helen?

Also, you don't have friends or family affected by the blasts today do you???


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17893 07-07-2005 10:07 AM
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Michael, As I understand it, perineural involvement means the tumor has included some nerves or part of a nerve. Which means the cancer has more chance of travelling elsewhere through your nervous system. Angiolymphatic invasion means it has included blood vessels or small lymphatic pathways )again, this is my best understanding. Your doctor will have a better one). Again, indicating more of a possibility of cells travelling elsewhere.

It's definitely an indicator you should get the most aggressive treatment available. I had both of these in the path report from my tumor too, even though I didn't have any lymph nodes positive.


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"
#17894 07-07-2005 10:13 AM
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On another note, I just need to vent about this. What is going through a doctor's mind when you, obviouly worried and afraid as it is, say "that sounds bad" for him to reply "no that's VERY bad"? What possible good do they think they are doing there? Couldn't they just say, "yes, it's bad" and leave it there? Is there some *point* to increasing the fear that every one of us has of losing our battle with this disease?

My ENT has also said things like this to me (as in the last appointment when I said "I'm really scared of a recurrence" and he said "well you should be scared". Honestly, in what way was that helpful?


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"
#17895 07-07-2005 11:45 AM
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I am so confused..

How could you have had both of the same characteristics but have been Stage II?

I got the feeling that since I had 3 nodes involved I am Stage IVc or something.

Any ideas?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17896 07-07-2005 12:07 PM
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Michael, be very careful getting to hung up on stages and the like. Staging and grading is a very useful tool for physicians and very misleading to patients. Staging, for example, is used for phsyicians to communicate amongst themselves the behavior of different cancers. And because you have certain attributes does not necessarily mean what you and I would believe it to mean.

Take me for example. When I was orginally diagnosed, CT'd (twice) and biopsied (twice) everything indicated that my lesion remained in situ. About 24 hours later they decided the cancer was invasive and I had a hot node. So, I was, according to the charts a Stage III, locally advanced case. At the end of my treatment, I asked about this and was told that I was pretty far from that and would I please stop playing doctor!!

Remember this is your battle. To be fought on your terms. It will be as discouraging or hopeful as you choose . . .I know you will choose for hope!

Tim


SCC Right Tonsil, T2N1M0, Dx 12/04, Tx 40 radiation (180 rad), 8 Chemo (carbo), Tx ended 3/15/05, Selective neck dissection 5/24/05, 22 nodes, 4 levels, no evidence of metastatic malignancy!!! :-)
#17897 07-07-2005 04:07 PM
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Thanks Tim.

I appreciate the encouragment.

It's so HARD to stay positive right now.

I was ready to move on to the next phase. I had the 6 or 7 hour surgery only 7 days ago today, and this morning I felt better than I did BEFORE the surgery!!

Did your surgery path reports indicate Angiolymphatic invasion or perineural involvement...? I would guess not since you had no nodal involvement.

We both have RIGHT TONSIL, but I don't see what stage you were, maybe III? Or Stage I, since there was no metastatic malignancy..?

Thanks for the kind words!


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17898 07-07-2005 10:50 PM
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Tim Offline
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I had one hot node that was taken care of by chemo and radiation. My surgery came after the rad/chemo. Technically, I was stage III (T2N1).

Keep your chin up!

Tim


SCC Right Tonsil, T2N1M0, Dx 12/04, Tx 40 radiation (180 rad), 8 Chemo (carbo), Tx ended 3/15/05, Selective neck dissection 5/24/05, 22 nodes, 4 levels, no evidence of metastatic malignancy!!! :-)
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