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#66052 09-18-2007 05:44 PM
Joined: Jul 2005
Posts: 69
for2or6 Offline OP
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Hi guys,

First of all, thanks for all the good wishes you guys have sent my way. They certainly help.

OK, so I went in today for my possible 2nd neck dissection after the needle biopsy 2 weeks ago was inconclusive. My regular doctor had his retina detach, so coulldn't do the surgery. Yesterday, we met with his associate and went ahead with the procedure today. He was able to get a good tissue speciman that went to pathology-I was under full general anethesia because they were going to proceed with dissection if malignant. Well, they still can't get a conclusive pathology on this. It is a mass with 2 different atypical cells characteristic of spindle and squamous but not definitively showing up as malignant but I get the feeling they are pretty sure the cancer is back. As for the mass, they cannot safely resect it - it is too close to the subclavian artery and is wrapped around my collarbone and is just starting to touch the top of my lung. This does not sound good but I am trying to remain positive. My family is freaking out - I know I will be embarrassed to see this new doctor again, because I believe my husband was not very subtle when he told him to please communicate with him in layman terms - this is a young doctor who hasn't yet learned how to talk to all different people - he's a walking textbook as far as terminology goes.

Anyway, we now await more extensive pathology results and maybe we'll know more by Friday. Next week, we'll meet and discuss further treatment options - it is getting scary when surgery and radiation is taken out of the equation, however, he did say there was someone we could talk to about re-irradiating and there are chemo and drug therapy options. So far, my lungs are clear but I shudder when I think about leaving this mass in there to grow.

Anyway, they let me come home late this afternoon after about an hour in recovery. Usually I am very sick after general anethesia, but they gave me Zofran beforehand and I feel fine tonight. The hardest part was going without water till they finally gave me some ice chips about 4:00 this afternoon - I had not had water since midnight of course. I know that's the way it has to be, but it's hard. I only have about a 2 inch incision and he stitched that up from the inside and glued the outside. My shoulder is what is hurting the most but I have pain meds for that. I'll be glad when we know exactly what's in store, but I have a feeling this is going to be a hard fight. I don't understand how you can feel so good and have this mess happening. I have absolutely no other health issues, feel great, have lots of energy. Just started back to college after 25 years and absolutely love it, am doing well in my classes - have to brag just a little - took an Anatomy and Physiology exam yesterday under all this stress, didn't study over the weekend as extensively as I normally would have and made an 88 on the lecture exam and an 89 on the Lab exam. I love the subject, want to be a dietition and care for head/neck patients, thought I was good to go after 3 years clear and now the hammer has fallen. I will get my head around this and deal. The worst part is dealing with children's and husband's reactions. My kids are older - 22, 18 and 16 but they are just old enough to know this could be bad.

Thanks everyone for listening - I know you all are dealing with same issues - at least we have somewhere to get these feelings out. I'm thinking about each of you as I write. Can I scream now?- I HATE THIS DAMN DISEASE OK all better

Love,

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#66053 09-18-2007 07:01 PM
Joined: Aug 2003
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Hi Pam,

Wow, what a day it's been for you! Big cyber hug sent your way. Scary isn't it, all the talk that they give you and the not knowing exactly what's going to happen. And then the mother in us can't focus on just our feelings, we get all caught up in our childrens and our husbands feelings..........so it's like we're carrying the emotions of an entire family on our shoulders. Boy, can I relate to you on that one. But, it's what we are so why fight it.

Sometimes I've found myself secretly wishing this had all taken place when my children were very small, when they were to young to understand and know what this could all lead to. I find it much harder to deal with my newly turned 17 year old than it is to deal with my 3 year old grandaughter. She simply doesn't get it, so no worries. I'm just Nana, period. With my older girls, I can see the understanding in their eyes and their behavior and I hate it. But again, it is what it is and we can't change it so I just roll with it and make myself available to them

I hope you get some encouraging news on Friday, please keep us posted. Get some rest, do the impossible and try not to worry, and know that we're all pulling for you.

Love,
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.
#66054 09-19-2007 04:43 PM
Joined: Jul 2005
Posts: 69
for2or6 Offline OP
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Hi Minnie,

Did you get any results from the doctor's review with the insurance company? I sure hope that gets resolved and you can be relieved of at least that stressor. I logged onto your care pages and you have such a beautiful family.

I feel better tonight that I did this morning-didn't wake up feeling like I had been hit by too big a truck but was definitely groggy and sore. They must have put some good medicine in my IV before they discharged me yesterday cause I didn't feel much pain last night till early this morning. Thought I might try to go to school tomorrow and sat down to do some homework I mised yesterday and decided that wasn't going to happen just yet. I made plans to be out all week and I just have 2 classes left, so I may just use them catching up and be ready to go Monday.

Just wanted to check in and again, I sure hope you heard some favorable news about the insurance coverage. Thinking of you lots

Love,
Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#66055 09-19-2007 06:16 PM
Joined: Sep 2006
Posts: 1,357
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"OCF Canuck"
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Pam:

I discussed having radiation a 2nd time with my radiation oncologist and he said that he has several people who have received radiation more than once. There are now different forms and options so don't automatically rule that out - or rule out ANY other treatment including surgery - until you know a whole lot more.

I have typed and retyped what I want to see about 50 times now, and cant seem to come up with the right thing to say to help. If I was there I would cry and scream with you. I would tell you how lucky you are to have grandchildren and that no - you do not want this to have happened when they were younger. I know you treasure each and every one of your children's growth years.

If you get a chance - go to your local library and find the book "Chasing Daylight". It was written by someone aged 53 who was diagnosed with cancer and had 3 months to live. There is no happy ending, but the book truly is inspirational about how we live each and every day. I found it calming.

Hugs. Know we are all here praying for you. Let us know when you have more news.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
#66056 09-25-2007 12:00 AM
Joined: Feb 2005
Posts: 2,019
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Pam, I'm thinking about you and hoping you have gotten the results of that biopsy by now and gotten some good medical advice abotu what to do if necessary. That this is happening just when you went back to shcool and are doing so well is so frustrating. But then there's nto one case of anyone getting a recurrence on this board where it didn't seem completely unfair to me. I hope your teachers are willing to work with you around all this if you do have a recurrence but want to try to keep a class or two. I have a student undergoing radiation for some kind of cancer right now and she wants to stay in the class and I'm hoping she can do it--doing everything I can to support her.

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"
#66057 09-25-2007 01:54 AM
Joined: Jul 2005
Posts: 69
for2or6 Offline OP
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Nelie,

Thanks so much for your kind words. So far, I don't have the results back - yesterday, my stand-in doctor and my regular nurse were both out of the office and the report wasn't back yet. Hopefully, later today. I started back to classes yesterday and yes, I am behind but I think I can catch up. I was able to download class notes from 2 of my classes and I had a big Biology test when I went back yesterday. Most of my teachers are working with me. I don't know how I'll schedule treatments around classes but I'm sure I'll get something worked out. My doctor will be out 4-6 weeks at least, but he is still able to make decisions about what to do etc. He just can't operate - I'll be better when there is a plan in action to get this out of my body. I'll stay in touch - I definitely need the support of everyone here.

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#66058 09-25-2007 06:40 AM
Joined: May 2007
Posts: 632
"Above & Beyond" Member (300+ posts)
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And you definitely have it Pam--we can all empathise with what you are going through and hope for the very best for you.
Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
#66059 09-26-2007 11:22 AM
Joined: Apr 2006
Posts: 583
"Above & Beyond" Member (500+ posts)
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Pam,

Thinking of you as you once again go through this darn waiting game.

None of us like going through this once, let alone twice! Praying for you.
Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015

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