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#99638 07-17-2009 05:21 AM
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I am so tired of being worried about a recurrence all the time. I want to get back to my life before cancer, and I can't. Just before all this junk started happening hubby and I were discussing adding to our family. Well we put that on hold because of the stupid, nasty cancer. Then I get an all clear PET scan and my ENT said to go ahead and add to the family. I wanted to make sure it was okay to have another child. Well a few days after I get another stupid sore in my mouth. That one has gone away, but this morning I wake up and I have another one on the left side and looks like it is on my jaw bone. It may be just a sore, but I can not let this cancer thing go, and I am sick and tired of it. I no longer can look at an ulcer cold sore the same away. I am now constantly wondering if it is that stupid cancer coming to ruin my life again. M y next counseling appt. is not until August 5th, and I need it now! I am going insane and do not want to talk to or see anyone. You'd think I would be excited about a clear PET scan, but I just keep thinking what it if was negative. I know, I know I can not think like that forever, and most days I am okay, but yesterday and this morning have been horrible. Well, Thanks for letting me vent. I feel much better now.

Last edited by walknlite; 07-17-2009 05:22 AM. Reason: typo

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jan 2009
Posts: 216
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Vent on, sweetie....sometimes it's the only thing that helps and throwing it out there where you can see it actually makes it easier to deal with.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #99646 07-17-2009 06:29 AM
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Angelia,

We all worry about a recurrence post Tx and unfortunately only lots of time will push those thoughts further back in our brain. A sore throat, the onset of a common cold, a sore spot in our mouth, a nagging cough, any of these will set off all our alarms and why shouldn't they so close to our cancer experience. Hell we drive like saints after getting a speeding ticket and out life isn't at stake. It's just our nature.

Now that said, it doesn't mean you should dismiss anything either as needless worrying so if it bothers you, then change your appt and let your professional look at it. That's what I would do.


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.
davidcpa #99661 07-17-2009 10:14 AM
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Well Angelia, you sound very normal. We all struggle with those thoughts and I know I have been helped by CLEARLY laying out my thoughts to my oncologist, and listening to what he has to say. I prefaced it with "you might think I'm crazy...but I need to talk about this with you". He/She will tell you there are no guarantees and they are right, but at least they can address your fears.

It would also be worth talking to a professional to help you learn how to live post cancer. Maybe your cancer center has a psycho-social service, or maybe your employer offers some counselling? I have found those very very beneficial.

Can anyone promise you that you will be around to see all of your children grown and you get to see your grandchildren? Nope. We want someone to say that, but truth is that no one can get that guarantee. My niece was 32 years old on her way to work on Friday morning when someone lost control of their vehicle. She left a two year old. NONE of us knows what lies around the next corner - and I believe that is a GOOD thing. All we have is NOW, and we need to make the most of NOW. We cannot spend our time in the future - it isn't here yet and the past is just that - past.

I worried when I got a pup about whether I would be around to see it fully trained, whether I would be burdening my husband with this dog, etc. and while there certainly ISN'T a direct correlation to having children, my psychologist's answer to my question is approipriate. He hasked me if I thought that people who died in car accidents or from heart attacks worried about this type of thing when they made a decision? The answer of course is no, they didn't. All we can do is live in the NOW. I think one of the hardest things is to let go of control. To accept that whether it comes back or not is BEYOND OUR CONTROL. We do, of course, do our best to be sure it doesn't - eating, no smoking, etc - but basically it is a crap shoot and there is no way for you to CONTROL what is going to happen to you. You have to let go and trust. Tough to do, but it is doable.

I am VERY happy you posted. We do know the feelings you are having. Try to be calm and stay in the moment.

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)
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Vent away Angelia, we will listen and think you sound like one of us doing it. Now if we could only listen to our selves and let it sink in as to what we say to others.


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
EzJim #99678 07-17-2009 05:49 PM
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Posts: 1,412
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Thanks for all your kind words.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jul 2006
Posts: 388
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Angelia - Your "bejeweled" friend here - asking if you can see someone any sooner, just to get this off your mind that hopefully, it is simply a cold sore or something innocuous like that? Vent anytime you like and let us know what it is. My wish for you is that it will be GONE before you even see a doctor!
Warmly, JaneP


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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Thanks for all of your encouragement. That sore is getting better and does not hurt as much as it did. My ENT said that if it was not better by this Thursday to call and make an earlier appt. It is getting better and the swelling is going down. I am not sure what I did, but it sure had me worried.
I am addicted to "bejeweled". Aren't you?

Last edited by walknlite; 07-19-2009 03:14 PM. Reason: typo

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jan 2009
Posts: 1,844
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Joined: Jan 2009
Posts: 1,844
Angelia, I'm with you on this dear, thank you for voicing it. I just got my ENT to talk with my surgeons in Seattle to try and reanimate my face or at least get my lips working again...but I was freaked out by an irritation on the opposite side from my primary and didn't know if I was going to go through the procedure...what would be the point if I had to go through this sh!t again? I'm wiht ya dear...mentally I'm wearin thin coming off of the pain meds I think.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #99862 07-20-2009 07:27 PM
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Posts: 1,412
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Hopefully these thougths and feelings will supside with time.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jan 2009
Posts: 225
"OCF across the pond"
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Posts: 225
Hi Angelia,
I think we all worry. MArtin has a cough and I worry, he sneezes and I worry, we also have this swine flu pandemic here and I worry if he catches, if i bring it home with me, he won't be strong enough to fight it. BUT it's just a cough, a cold... Our consultant is very pleased with amrtin's progress and says the cancer isn't back.
As for children, Martin has a 17 year old daughter from a previous marriage. We had tried for children but then the cancer. Now Martin told me he was planning to get back to work seriously and save up for a year so that we can have a child and I wouldn't have to worry about money during maternuty leave. That's for next year, but he is positive... just very grumpy.
We need to be aware, but not worry it just ruins the good times.
Keep positive.
cecilia


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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