| | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Cookey that is exactly what I am looking for and I'm not getting it. I thought that by comparing this scan to the one from april 15 I would be able to see the differences in the size of the tumor and know why it feels like I am chocking. Will the lymphatic fluid show on a CT scan? And I know that you can not answer this but why isn't my doctor telling me this - maybe she doesn't know??
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | I am no expert patty but i think the three different scans(mri,cat and bone)each have there own area of definition(tumour,tissue,bone)and i guess they will all show fluid but they dont all define tissue and tumour.Lymphatic fluid is mostly diagnosed by physcial exam(soft and spongy and leaves an impression when pressed as opposed to tissue scarring which is hard and tumour which doesn't leave a indentation when pressed If the tumour is anywhere around the trachea(windpipe)then as it grows it pushes the windpipe off centre and narrows the width,reducing the oxygen intake (a bit like pressing on it with your finger)so you may feel you are gasping for breath.I think the point is if the last scan identified where the new tumour is situated then they should know from your symptoms how it is developing.I cant imagine why they are not discussing this with you.Sorry i cant help more.
liz
Last edited by Cookey; 05-14-2009 03:06 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I sure hope your day was a good one Patty. Nice dry day thT YOU COULD ENJOY. DAMN CAPS key LOL , Too many keys and not enough fingers.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Cookey - no need for you to apologize - you are helping more that you know. I made some progress today and will share it over the weekend. My sister is here tonight and I am going to try to sleep. I do not sleep very well when I am here alone.
I had a wonderful day outside Jim. My grassis so green, thick and pretty. I just stood around in it barefoot.
Ok guys I must rest my head keeps hitting the keyboard.
I love you and will talk with you tomorrow - I believe that I am finally getting some things straight and that the doctors are starting to understand the type of patient I am. Gee wiz it took them long enought to figure this out. LOL
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Poor keyboard getting zonked by that hard head . LOL J/K Patty so don't hurt me.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Patty,
I've just been reading this thread and my heart goes out to you. I know it's hard to be your own advocate but I know you are strong and you can do it. I have some thoughts for you. First, get another opinion. I know this can be trying and hard but I think it is worth it. Maybe your sister can help? I agree with you about the scans. Who cares how much costs? If you know what you are dealing with it make you feel better. I'm not sure why the doctor doesn't get that. You may have said this and I missed it so I'm sorry. What does the doctor think about the swelling? Isn't there anything they can do for that? Cookey mentioned the lymphatic drainage. I am not an expert but I had a bubble filled with something on my tongue this past summer and they said it was because my lymphatic system was not draining properly. I talked to my dentist about it and he did oxygen ozone injections and that drained everything and I've been fine since. Again, I have no idea if this would help what you are dealing with but it can't hurt to ask. The only problem with that is most doctors don't know about it so they don't want to do it.
I'm always thinking of you:)
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Jim if you only knew how hard this head is! Love you
Suzanne you are right I just have to ask.
I stomped my feet and got the CT today. This way we can take the one from 4/09 and 9/08 and see what is happening. Then devise a plan. If it is pallitave care so be it, if something else can be done then let's get busy. I am meeting with the Oncologist only and she is Knew since I fired my first on in August when he sent me ome over a 3 day holiday weekend with at chemo tak-home-a-sack only he made it 4 days because he was taking the days off I needed the extra day of fluid and wound up in the hospital again. He blamed my support system and I fired him.
I will post the results of Weds meeting. I have been fighting a fever, tonight it was 102. I want to feel better and spend more time outside.
Keep praying and being hopeful. Positive thining.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I'm glad to hear you got the scan. I'll be looking forward to hearing what it shows. I'm proud of you for sticking to your guns. It never hurts to ask what can be done..all they can say is no. Keep us posted!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | Patty:
(1)Please remember to ask about "Induction Therapy". They should be able to look of the "Tax 324" study. Also, I've noticed that there are a numerous other new studies using different combinations. Maybe?
(2) My ENT was able to put a small line, with a light bulb at the end, down my throat to see my epiglottis and larynx. Maybe your ENT can help?
You are in my nightly prayers. Stay positive and strong.
Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sandy, ever time I have an appt with either my Oncologist os the surgeopn tha did my implants, they put that scope thru my nose, both sides and into my throat and chek me that way. It is a good tool and they can see what is occuring if anythng.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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