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#147549 - 03/29/12 02:33 AM Fear of the unknown
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Hey...I need to vent....how the heck did you get past the fear of recurrence? I get it together and then within half a day it has crept back in. I'm pretty sure Kev feels the same way but we don't talk about it and that's ok. He's back to work so I have 22 days to gather it together. It just seems like I keep hearing that BOT that went to lymph nodes leaves a bad prognosis. It went to the whole right side of his neck, but they did not remove ANY nodes. The MO said he didn't think he would need to have them removed with the regime of chemo and then the radiation they were going to hit him with.
It's stupid. I believe in God. I had full faith that Kevin would be healed during tx. So now I panic?? WTH???
I know, breathe. Logically, I know. Maybe I should start drinking!! I think what I'm feeling is normal, right???? How did you other caregivers get past it? We were actually doing really well until the recent PET false/positive. I think the way the docs responded made us realize that recurrence is truly a possibility where somehow we thought we were in the clear.
Thanks for listening!
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147550 - 03/29/12 03:36 AM Re: Fear of the unknown [Re: KP5]
Cathi Carpenter Offline
Supporting Member (50+ posts)

Registered: 02/28/10
Posts: 79
Loc: Aurora, CO
Kathy, I think that mine and Kevin's diagosis were very similar. Right tonsil was the original sight, spread to BOT and right neck. My team thought that after the original surgery to remove my tonsils they could get the rest with the "chemo induction" so that I wouldn't need the neck dissection or have any lymph nodes removed. So far they have been spot on with their diagnosis and treatment......but every scan...every bump or lump sends us in to a tailspin...who knows if this will ever change. Probably not. Nobody knows what any of this is like unless you've been through it!! At least you are with a group that "does know"!!!
_________________________
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends

*** 1-7-16 passed away unexpectedly ***

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#147554 - 03/29/12 04:32 AM Re: Fear of the unknown [Re: Cathi Carpenter]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9244
Loc: PA
Kathy, I understand where you are coming from. Its a fear we all have. After I finished radiation and chemo, I was so afraid of a recurrence that I avoided the "Recurrence" threads like the plague. Well after realizing that I was being pretty foolish thinking that reading something could jinx me I ended up with a recurrence anyway. Then another year later it got me again. Those recurrences taught me alot! They taught me not to waste my time being afraid of something I have little if not any control over. Worrying wont change the future. Its possible that any of us can get a recurrence. The patients who like Kevin that are HPV+ have better odds against having a recurrence.

All I can say is that some caregivers end up taking anxiety meds right along with many patients. Cancer is a very frightening experience. It forces us all to take a good long look at our own mortality. For most of us, we arent ready to admit that we are fragile and could be taken by this disease. Do the best you can to enjoy life. The longer your husband is past his treatments, the easier it will become to go on living your lives.

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147555 - 03/29/12 05:16 AM Re: Fear of the unknown [Re: ChristineB]
Pandora99 Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Registered: 09/14/06
Posts: 1328
Loc: Winnipeg, Manitoba Canada
After 8 years, I can tell you that the fear of recurrence does not go away - that is the bad news! The good news is that we do learn to live with it. Living with it does not mean you don't ever feel that cold sweat stomach dropping panic. It will come back Around testing times and with every lump of bump - it means you are vigilant but not paranoid.

Remain vigilant - but only a bit more so than you are for heart disease, drunk drivers or any of the other things that can befall any of us.

Cancer is a thief. It has already stolen more from your lives than it should have - don't willingly give it any more. How does that go? Worry is like sitting in a Rocking Chair -it gives you something to do but it doesn't get you anywhere!

(yes please do remind me of this post next to.even I have a panic moment!!!

You are on the recovery / healing track - vent away.

Donna
_________________________
Donna,61,SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!

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#147556 - 03/29/12 10:39 AM Re: Fear of the unknown [Re: Pandora99]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Kathy - you definitely are not alone in this. Try to concentrate on the good and positive parts that the doctors or anyone here has mentioned. My son is more than 5 years past end of treatment, but I still have to struggle to not let myself go to all the "what ifs" and to stay on tract. When I notice the negatives have taken up too much time (like more than 30 seconds) I force myself to switch to thinking about all the good stuff. As time goes on you will be able to see more and more positives like the success Kevin has had so far and the good ideas and experiences you see with others here. What has helped me is the deep breaths (10 of them and then start over when the negative thoughts interrupt), exercise even if it's just doing toe touches or brushing your hair while bending way over towards the floor, keeping busy, coming here and trying to help someone else through their own panic or to just give myself time away to be in good compassionate company (and not thinking my own dark thoughts). At one of my worst panic attacks, I did call my family doctor who prescribed something but after taking only 1/2 the recommended dose, I was so sleepy and out of it, I barely made it to my son's appointment for his therapy session and had to wait in the car for fear I would fall out of the waiting room chair. He drove back home that day. If you do check with you're doctor for meds for yourself be sure and ask about what you could expect re effects or contraindications. Read the labels in case the pharmacist does not mention everything he could about the prescription. One of my son's prescriptions for depression mentioned that it could cause suicidal thoughts which can be a bummer to say the least. There is good news in all this - and getting through Tx does make you appreciate all the small steps in recovery and helps you to realize how precious life is and how much love there is between you and the people you care about. You will be able to celebrate even the smallest of accomplishments and appreciate more fully than ever, the moments you have together - and even laugh about the funny things that happen (yes! they do happen!) So - DO vent away anytime you feel the urge - it will help you and it will help others here as well.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147560 - 03/29/12 01:02 PM Re: Fear of the unknown [Re: Anne-Marie]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
I think that we have all been there at one time or another. Just when I think that I have let that fear go, something happens to trigger it again. But don't be afraid to vent as much as you like; this is the place to do it! I had an experience this past summer that let me keep things in perspective. My husband and I were driving home from an art show and we got hit by a fire truck! OK, I survived oral cancer, my husband survived heart problems, and we almost bought it, anyway. Anything can happen anytime to any of us. We just have to keep on keeping on.
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#147561 - 03/29/12 01:32 PM Re: Fear of the unknown [Re: zengalib]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Thank you so much everyone. I have been walking around like a time bomb with all this bottled up. When Kevin is home it's even harder because he is so GRUMPY that I wouldn't dare say how I'm feeling. He is back to Alaska now for his 3 week hitch so I am breathing a bit easier. It's just easier when he's not here and I know that might sound bad, but it is the truth. I guess it's because when he is here I feel like I have to "smile" for everyone. Our 3 kids are beginning to feel it and I find myself losing patience with my 86 year old mom who lives here too. Our 12 year old said a couple of weeks ago " Mom, you used to be more fun!". I felt so bad. I'm trying....
We have fun things planned this weekend and I woke up this am and thanked God for the day and asked Him to help me remember what it is to be happy. So far it has been a good day. I am going to try to be more diligent about being positive.
I am so unbelievably thankful for this site. NOBODY around me understands. NOBODY. They all think it's ridiculous to worry...it's not their best friend/husband/father that would be gone. Their lives will not change at all actually. We adopted these 3 precious kiddos 2.5 years ago. Never did we dream they might be without one of us.
Anyway, thank you again for loving on me for a bit. I will try harder to think positive. Track season and baseball start next week, so being a busy mom will help!!
Blessings,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#147562 - 03/29/12 01:36 PM Re: Fear of the unknown [Re: zengalib]
slim Offline
Platinum Member (300+ posts)

Registered: 01/23/09
Posts: 475
Loc: PA
Hi Kathy. What you are feeling is completely normal and most of us caregivers have had the same "out of control" almost panicky feeling at one time or another. I remember when John was going through treatments I felt much more in control because I knew we were doing everything possible at the time to cure his cancer. Treatments end and you are left feeling like "now what"? All I can say is that the fear never goes away 100% but it does get easier the more months you have behind you. John will be out of treatments 3 years April 15th and I don't get nearly as panicky and scared as I used to. Let's face it - none of us are guaranteed our next breath. We live each and every day to the fullest and love each other more than ever! Continued good health to both of you.
_________________________
Wanda (47) caregiver to husband John (56) age at diag.
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-13 - HBO (30 dives) tooth extraction

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#147563 - 03/29/12 01:39 PM Re: Fear of the unknown [Re: zengalib]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
I have to say it was a while before I could think about the future but then i realized i was letting cancer win if I spent all my time thinking about it and worrying - sometimes the thoughts creep in, then i ask myself - have I and am I doing ALL that I can to try and prevent a recurrence - ? Proper nutrition? Exercise? Stress relief? Treatment? Chck ups? Diligence? The answer is yes. Then it's out of my hands - sure I may have a recurrence, but I may have a heart attack or get laid flat by a bus or shot during a robbery at a supermarket - we take a risk everyday we open our eyes and climb out of bed. Enjoy NOW. Hugs, love, and prayers.... and venting is the best thing !!!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147564 - 03/29/12 02:24 PM Re: Fear of the unknown [Re: Cheryld]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
In there with you all. I am waiting for my husband's one year pet scan results - tomorrow or early next week. My extra added bonus is that stress can set off an autoimmune flare with me - bad for my health and making me useless to those around me. Guilt is a big issue - guilt for my husband's disease, guilt about being too negative or not worrying enough (simultaneously: I blame some of this on my cheery Russian heritage - ever read a happy Russian novel?). Ugh.

On a cheerier note, our son is coming home for easter weekend, so that will help.

Thanks for the vent on your bandwidth, Kathy. I am sure you will be a fabulous and fun track and baseball mom this year.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147567 - 03/29/12 06:23 PM Re: Fear of the unknown [Re: Maria]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Maria - you just mentioned another great reason for doing everything you can to find ways to think the good thoughts: stress and the immune system which can definitely interfere with health. And coming here to vent is a way of being able to climb out of the darkness. Now, don't start worrying about how you are worrying over stress! That's a double whammy in itself. Maria - Make some cheery times with your son this Easter weekend!
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147568 - 03/29/12 06:57 PM Re: Fear of the unknown [Re: Anne-Marie]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
Thanks, Anne-Marie!
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147590 - 03/30/12 12:27 PM Re: Fear of the unknown [Re: Maria]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Maria -test time always sucks. But particularly because of your autoimmune issue.you shouldn't have to wait more than 24 hrs for a scan result. Call get your answer right away and remember forget about the guilt there's only so much tou can be responsible for, hugs
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147643 - 03/31/12 11:26 PM Re: Fear of the unknown [Re: Cheryld]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I have to agree with Donna, cancer has already taken from you, don't give it anymore.
I believe that God is in control. Any circumstances we endure are meant to happen for a reason, Kathy.
Try and rejoice in the small moments of each day. When those thoughts come up, take a moment. The fears are valid! Just use those moments to thank God for all that you do have. Turn them around into something good.
Love to you.

Christine
_________________________
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.

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#147644 - 03/31/12 11:27 PM Re: Fear of the unknown [Re: CMMoore]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
ps - easier said than done... YES! But, it's worth a shot. And we are always here too!
_________________________
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.

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#147749 - 04/04/12 01:27 AM Re: Fear of the unknown [Re: Maria]
Jeanna F Offline
"OCF Down Under"
Gold Member (200+ posts)

Registered: 08/19/09
Posts: 207
Loc: Melbourne, Australia
Hi Kathy....sadly, that fear never goes away. Rod found a lump at the back of his ear where his neck has been sore, this morning. Feels like hard bone...he is 'shitting' himself. I fear too, I just try to keep it under wraps - sometimes though he says he feels like I don't care. But quite the contrary. He is seeing a physio in the morning, she might be able to shed some light on the lump. No one wants a reccurance, and as a carer, I feel sometimes that I'm not sure I'd have the strength for a recurrance, but I know I would get it from somewhere. You just need to act on lumps, bumps, and pain etc, immediately, so your mind can be put at rest for a bit, and during that time, make the most of a good day. Everyone is here for you guys.....xxxx
_________________________
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.

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#147755 - 04/04/12 01:43 AM Re: Fear of the unknown [Re: Jeanna F]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Thanks everyone.
Jeanna, I pray this is not recurrence for you guys. You're right though. We will pull the strength from somewhere and get through it if it happens.
Christine, wonderful to hear from you. Thank you for your words. It's better right now cuz' Kev is in Alaska at work so we are not in each other's face all the time. He says he's checking things daily. That's all we can do.
Thanks again. Jeanna, please keep in touch.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#148514 - 04/19/12 07:05 PM Re: Fear of the unknown [Re: Maria]
Barb Offline
"Above & Beyond" Member (300+ posts)

Registered: 05/27/05
Posts: 497
Loc: Ohio
Kathy all people in all walks of life who experience a great illness have a fear of the unknown I believe. As for me everytime I get a sore throat even after all these years my first thought is "Oh no! It's back!" Then again my father-in-law had a massive heart attack and he refused to get out of bed for fear of having another one if he did so much as speak to long.

In the end we just have to make use of each day and be grateful for it. Not always easy I know but if you can do it 5 days out of 7 it makes for a better quality of life for sure. My prayers are with you husband and your as I was once also in your shoes when my husband had "c" and I was the caregiver.

Meanwhile every day you get is another day of hope.
Blessings,
Barb~
_________________________
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran

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