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#28295 10-14-2006 02:25 PM
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Hi,

we are in a state of choc. When everything seemed to go well, David felt a lump on his left side of neck two weeks ago. He didn't tell me anything to avoid the panic button. We were on a ski trip with the kids for the spring break ( yes, it is spring in New Zealand!!) and it was my birthday as well.

The following week, he went for his 6 week f-up and the ENT felt the lump. Again I knew nothing. The ENT proceeded with a FNA on the spot. David went back this past Wednesday and it came back positive with SCC. And again I knew nothing. Wednesday night after putting the kids to bed, I went to watch a bit of TV and relax. David got in the TV room, closed the door, closed the TV and sat down beside me saying with tears in his eyes that he had bad news. I NEVER saw this one come. I had to breath a few times as I thought I was about to faint. Everything started to spin. We held each other and cried and cried. He explained that he didn't want to worry me during the holidays. I am just devastated, we are devastated.

At the doctor's office the physical exam has shown nothing. Friday night David had a scan, we will known the "verdict" this coming Wednesday. We all know what could be the worst case scenario. We can only hope now that it will be the best case scenario and this is all the primary resurfacing.

We haven't told the children yet as we are waiting for Wednesday meeting and what will happen after that. Depending on the findings, the ENT will send David to Australia for a PET scan. The pronostic is now SO sinister.

For us all this is the really first life challenge and trauma. I never thought that sadness, fear and distress could be so strong emotions to the point where I am now physically sick. The emotions are so overpowering. I am trying to tell myself that I will be strong for david and the kids but I am just stunt, like I can't move. I can only hope that I will find the strenght somewhere, somehow and very soon.

In the meantime, I will try to find information on treatments available for recurrence considering the worst case scenario and the best one. We don't believe in god so we can only cross my fingers. As so many of us, I feel that my life, our lives is a nightmare.

love, marie-lyne


Wife of David, 44yo, SCC-BOT-R) mod. rad. ND in Jan 06. 35x standard RT from Feb-April 06. Recur on L) side same level in Sept 06 with mod rad ND. 1/48 node positive SCC + 1/48 positive micropapillary carcioma consistant with thyroid CA.
#28296 10-14-2006 03:44 PM
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Dear marie-lyne, It's natural for you to be physically sick at this news,[most of us caregivers to our loved ones react that way] but very soon you are going to be the one everyone is going to lean on, so you need to get on your feet in a hurry.[read that to mean "you can't fall apart"] Since you have been through some of this before, you know more about what you will need to do to get ready to fight this again. Get your support system in place again. Remember, there are still good avenues of treatment available to him. Make every day count. I'm so sorry your family is dealing with this again. 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

:
#28297 10-15-2006 05:22 AM
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Get David to begin posting ASAP. He will have many unanswered questions and fears to deal with. Both of you will benefit greatly from this site. All to often only 1 of the 2 seems to do the posting. There are many here that have had a second go round....and they are still here.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#28298 10-15-2006 05:36 AM
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Marie-lyne,

I have only been a member of this board for a short time finding it, coincidentally or not, when my husband was diagnosed with his recurrence. He was originally diagnosed and treated in 2002 for SCC of the tonsil.

I know exactly how you are feeling now with all the unanswered questions. The tears are always on the ready and much of the time I feel like I've been hit by a big, loud train. We hope to find out more this week, too, about options for my husband.

I will be thinking of you and your dear David.

Loretta


C/G to husband SCC of right tonsil, Dx 5/02. Tx concurrent rad with Taxol and Cisplatin. Consolidation therapy Cisplatin and 5-FU. Recurrence 9/06, neck dissection 10/06. Tx with twice daily radiation; two in-patient infusions of Cisplatin.
#28299 10-15-2006 09:58 AM
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Marie-Lynne,
Contrary to David's advice many patients can't or don't want to be up close and personal with this disease from an informational perspective. We see this here a lot and we have as many caregivers seeking information as patients.

I passed out in the ENT's chair when I got the first Dx and I can't even begin to imagine what a Dx of a recurrence would feel like, although, like most of us, I do think about it from time to time.

Just try to stay in the "now". Projecting into the furure will drive you crazy and there is always hope that there a solution to this, such as salvage surgery and/or ct.

We are here to walk with you and support you in any way we can.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#28300 10-15-2006 10:05 AM
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I will be thinking of you and your husband. Hope the best case for you. Good luck


Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
#28301 10-15-2006 10:46 PM
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Hi Marie-Lynne,
That is life. When you think everything looks fine and will go smooth as you wish, there is suddenly a hurricane threatening you and your family. I know you are now at the darkest part of the tunnel never knowing when the light will appear again. Recurrence doesn't mean the end of the world. A lot of people have their disease recurred after treatment and are able to get cured again when given timely treatment. David needs your emotional support and will rely on you to give him information about what lies ahead. I know it is difficult to tell you to stand strong but it is essential. See what the "verdict" is on Wednesday and work with the doctors for a plan that suits David best. There are knowledgeable members here who are very ready to give you full support.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#28302 10-16-2006 01:52 AM
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Marie-lyne, You are going through what each of us fears will happen. I know all of our hearts feel your fear and pain. So please know that we are here to hear you and help you in any way we can. But you need to remember how strong you were the first time. You can and will do it again. Each of us draws on a hidden source of strength that only seems to make itself available when we really need it. At least this time you have an idea of what is coming and can prepare as best you can. Hold David and your children close, gather everyone you can think of for your support system and determine you will attack this as a soldier. Fight on!
Best wishes and love!
Jamie

#28303 10-16-2006 04:56 AM
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I just want you to know that you, your husband, and children are in my thoughts at this difficult time. I'm sure all the emotions that you are going through are normal. But somehow it seems eventually we gather the strength that is within us, and are able to face the adversities that life throws at us. There is always hope. Hope for a better treatment, hope for a cure, hope that his case isn't the worse scenario. My hope is that all is well with you and David.


Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
#28304 10-16-2006 03:40 PM
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Hi,

I would like to thank you so so much for all the kinds words. I am finding myself reading your posts many times a day just to hang on to something.

I think that the children are feeling that something is not quite right as they are hanging around me constantly for the past week. I am entitled to things like: "I love you mom", Big hugs for no apprent reasons, massages. I even had a "you're beautiful mom" (which made me a bit suspicion as I thought something had been broken!!!) and then the look in my little Philippe's eyes was so pure sunshine that I decided it was just love. He is going to be 7 tomorrow. We are meeting the ENT specialist tomorrow as well.

I will keep you posted to what is happening. Thanks again for all your support.

love,marie-lyne


Wife of David, 44yo, SCC-BOT-R) mod. rad. ND in Jan 06. 35x standard RT from Feb-April 06. Recur on L) side same level in Sept 06 with mod rad ND. 1/48 node positive SCC + 1/48 positive micropapillary carcioma consistant with thyroid CA.
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