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#146448 - 02/27/12 09:37 AM Re: Newbie around the corner [Re: zengalib]
ALZ Offline
Contributing Member (25+ posts)

Registered: 02/24/12
Posts: 34
Loc: KL,Malaysia
Thanks all.
We did biopsy today, waiting anxiously for the result, hoping it is ok.. we have 2 different doctors treating us, one is head and neck surgeon who helps us in the pain management thingy during IMRT (ulcers are unbearable) and the oncologist who did the the radiation treatment.
So now the story is oncologist wants to do chemotherapy without knowing what is that bump is (even though he is going to do CT Scan in March). During our regular check up with the surgeon today, he made on table decision to perform biopsy and send it to the lab. So here we are now waiting for the results.
_________________________
CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins

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#146449 - 02/27/12 10:11 AM Re: Newbie around the corner [Re: ALZ]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2603
Loc: TN
Hi Al - It sounds like the surgeon is on top of things and being very careful with doing the biopsy, which is the only way to tell for sure what a bump or a lump really is. And it's been said before here that "sometimes a lump is just a lump" - so until the results come back, try to keep busy. The waiting for any kind of results is so difficult and it better if you can keep busy and distract yourself with other things. Now would be a good time for you and Ida to get all your questions ready (like the chemotherapy you were wondering about) for when you see the doctor again - or any questions you want to ask here. Hope everything goes well with the biopsy results. I will keep my fingers crossed, too!
_________________________
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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#146456 - 02/27/12 04:39 PM Re: Newbie around the corner [Re: Anne-Marie]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4976
Loc: Toronto canada
Hi there it sounds like your dr is being proactive which in my eyes is a very good thing... For me I'm not into wait a few months and see - because if it is a recurrence a few months is a very long time. That only gives the tumor time to take hold, grow and spread. I would not have a major surgery based on an unknown but a round of chemo might be something I would do. In my own opinion though unpleasant and not something we willingly commit ourselves to, has benefits that outweigh the cons, and most importanly have very few long term , or permanent effects. Good lck - hopefully the lump is just a lump.



****ADMIN UPDATE**** It is NOT standard procedure to give even just one dose of chemo until testing is concluded to determine exactly what the diagnosis is. One dose of chemo can cause the same side effects as the full course. Permanent and enduring side effects include hair loss, neutropenia, kidney failure, cardiac arrest, mucositis, peripheral neuropathy, hearing loss, cognitive dysfunction - depending on the type of chemo used. Whilst hearing loss may not be so bad with one dose of cisplatin a few of the other side effects can happen immediately and can also be fatal.
****DISCLAIMER****Remember that advice given by someone other than your own doctor should never take precedent over the recommendations of your own care givers, and that the opinions expressed here are those of the individuals posting them, and do not necessarily reflect the ideas of the Oral Cancer Foundation.
_________________________
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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#146482 - 02/28/12 06:13 AM Re: Newbie around the corner [Re: zengalib]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
ALZ - ((welcome)) and know that we are here for you. I never expected that I'd be a CG in my early thirties either. I was in no way prepared for what was to come, but I too found this forum to be my lighthouse in the storm.

Don't feel intimidated by the doctors. Ask your questions, state your opinions, and stand up for your partner. I know that sometimes my husband needs me to advocate when he is too overwhelmed. At the beginning it seemed like big shoes to fill, but you can do it.

- 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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#146555 - 02/29/12 12:54 PM Re: Newbie around the corner [Re: CMMoore]
ALZ Offline
Contributing Member (25+ posts)

Registered: 02/24/12
Posts: 34
Loc: KL,Malaysia
Oh gosh....I'm so so devastated today to know the biopsy result...and it's via what's app for god sake due I can't be at the hospital because of work. And it made me nearly fell on the ground even I was in a business meetings that needs my input..he'll it was sooooo hard for me to wait till I finished work and business dinner just to breakdown and cry!!...so now what......I thought at least we got a break to breathe...build up immune system...but no no it had to come right back at the same freaking place....oh gosh I am soooooo mad now...so down...so nervous...don't know what's gonna happen next?...surgery? Chemo? I know it's not me...but I am feeling it the most and breaking into pieces now........................I need Xanax.....
_________________________
CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins

Top
#146556 - 02/29/12 01:26 PM Re: Newbie around the corner [Re: ALZ]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4976
Loc: Toronto canada
Hi there - sorry for the recurrence - chemo may help but I imagine surgery should be the next step. Did they do a neck dissection previously? And where is the lump? Good luck... Sorry you're going through this again... Saying prayers!
_________________________
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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#146558 - 02/29/12 02:26 PM Re: Newbie around the corner [Re: Cheryld]
ALZ Offline
Contributing Member (25+ posts)

Registered: 02/24/12
Posts: 34
Loc: KL,Malaysia
The bump was found on the tongue floor...I can't imagine surgery..we never been thru that yet....I'm just falling into pieces thinking what my baby gone through and again going through it....ah damn it...I've never been a why person...always how..now I'm asking god...whyyyyy again!! Sorry guys...just venting out here
_________________________
CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins

Top
#146563 - 02/29/12 03:42 PM Re: Newbie around the corner [Re: ALZ]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Vent away. We are here for both of you. It does suck and you have every right to ask why and be angry. It would not be normal if you didn't feel this way.
When the raging passes you will both buckle your seatbelts and get on with the ride again. YOU can do this. Both of you.
Please keep us informed and know we are here to help you through. Vent, yell, cry...we are here.
Love to you both,
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 10/2012

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#146568 - 02/29/12 05:03 PM Re: Newbie around the corner [Re: KP5]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8511
Loc: PA
This place is for support for both the patient and caregiver. Its ok to vent! Im sure you are very upset by the recurrence. Its a terrible shock getting that dreaded news.

I know you are worried and upset but try to think calmly about his advantages this time over the first round. This time around he knows all the terminology. He already has all the doctors lined up. A second opinion is still a good idea. For my 2nd round of OC, I had just surgery to remove the tumor. Usually a recurrence is found much earlier than the first bout of cancer so its easier to cure.

Best wishes with everything!
_________________________
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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#146598 - 03/01/12 07:45 AM Re: Newbie around the corner [Re: ChristineB]
ALZ Offline
Contributing Member (25+ posts)

Registered: 02/24/12
Posts: 34
Loc: KL,Malaysia
Thanking god that the bosses (mine and Ida's) were very understanding and supportive.

Thanking god we found this site and met with you awesome people... I cant thank much.. being someone who is considered online almost all my life.. a place like this really gives me strength... and to strategize what needs to be done next...

_________________________
CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins

Top
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