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#148424 - 04/17/12 07:20 PM New to OCF  
Joined: Apr 2012
Posts: 10
ilyse Offline
Member
ilyse  Offline
Member

Joined: Apr 2012
Posts: 10
california
Hi everyone. My name is Ilyse. married and have two boys. I am new to this site, but not new to cancer. First diagnosed with tongue cancer (squamous)in 1999. Had tongue surgery and right lymph node removed. Was clear until Feb 2010. I found another sore on right side of tongue and pain in my ear and neck. Yes cancer back and under went another mouth Surgery. Almost a year later felt pain in neck again. Went to my ENT a couple of times. He felt and saw nothing, but I knew the cancer was back. Sure enough lump appeared in right side of neck. June 2011 had modified neck. All nodes clear, but Dr found thyroid cancer and a schwannoma tumor on right side of head on auditory nerve. Thyroid removed, recieved radio active iodine. Radiation and chemo (cisplatin) for 7 weeks. Thank goodness that is over. Now recovering from skull base surgery. Very thankful tumor (Schwanoma) is not cancerous. Dr. only removed 20% of tumor to spare hearing loss and facial paralysis. In a couple of months will have Gamma Knife Radiation.

I have found every cancer. Not the Dr's. Listen to your body. see a Dr. if symptoms are not gone in two weeks. Get a second oppinion. I have two ENT's and they both said get another oppinion.

This is such a wonderful site to read and share information. Let's us know we are not alone.

Keep fighting and don't give up. Treatments are not easy, but do able.

I wish everyone all the best. Take care.



Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.

#148427 - 04/17/12 08:13 PM Re: New to OCF [Re: ilyse]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 289
Kansas
Ilyse,
Wow, you have quite a story. You are so right about us having to be the vigilant ones. It is difficult to know where to draw the line sometimes, especially when it is so easy to worry.

I think a schwannoma is really slow growing--what do the docs say about that in relation to your oral cancer? I had an extremely slow growing sarcoma that was unaggressive in that it did not metastasize, nor infiltrate other organs except for the stomach which is where it originated. I have often wondered since if having a tumor like that made it easier for cancer to establish in my body. No medical person can answer that one for certain.

At any rate, I am glad for you that you are past treatment.
My thyroid lost function following surgery/chemo/radiation. After being on synthroid for 8 months I am finally feeling much better.

Thanks for sharing your history.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
#148428 - 04/17/12 08:14 PM Re: New to OCF [Re: ilyse]  
Joined: Jun 2007
Posts: 9,648
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,648
PA
Welcome to OCF Ilyse! Always nice to have another survivor join our ranks! You are so right with your advice to pay attention to your body and when something isnt right get it checked by a professional.

Wishing you all the best with your recovery and upcoming surgery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148468 - 04/18/12 04:12 PM Re: New to OCF [Re: ChristineB]  
Joined: Jul 2009
Posts: 1,369
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,369
Los Angeles
Ilyse - wow, you have really been through it. I admire your courage and send you all good vibes for continued improvement. Interesting about your ENTs telling you to go for different opinions. Dunno of course where you are in CA and I'm sure there are great docs everywhere. I had a wonderful team here in LA should you be nearby and need a recommendation.

Thinking of you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17
#148473 - 04/18/12 05:11 PM Re: New to OCF [Re: David2]  
Joined: Apr 2012
Posts: 10
ilyse Offline
Member
ilyse  Offline
Member

Joined: Apr 2012
Posts: 10
california
Hi David, I feel I have really good doctors. At least they put their egos aside and said feel free to get e second oppinion and they would not be helping me if they did nod suggest it. I am getting treatment at UCI. They have been wonderful. Did get a secobd opppinion at UCLA, but it is too far. With traffic (and we always have traffic) it is three hours one way.

We all have been through a lot, you included, Head and neck cancer is not easy. We both have had the same procedures and treatments. Nice to know we are not alone. Feel free to email me anytime. We are all in this together. Take care. Ilyse


Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.

#148476 - 04/18/12 06:56 PM Re: New to OCF [Re: ilyse]  
Joined: Jan 2012
Posts: 112
braziliangirl82 Offline
Senior Member (100+ posts)
braziliangirl82  Offline
Senior Member (100+ posts)

Joined: Jan 2012
Posts: 112
br


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
#148479 - 04/18/12 07:09 PM Re: New to OCF [Re: braziliangirl82]  
Joined: Jun 2009
Posts: 440
ESikon Offline
Platinum Member (300+ posts)
ESikon  Offline
Platinum Member (300+ posts)

Joined: Jun 2009
Posts: 440
Texas
Ilyse, you have been through alot! Your a fighter!!! I'll pray for continued health and way to be an advocate for yourself!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
#148480 - 04/18/12 09:23 PM Re: New to OCF [Re: braziliangirl82]  
Joined: Apr 2012
Posts: 10
ilyse Offline
Member
ilyse  Offline
Member

Joined: Apr 2012
Posts: 10
california
First I want to thank everyone for sharing there stories and reaching out. I wish I new of this site years ago. My hospital does have several support groups, but I have been too sick the past year to attend.

Yes, I was first diagnosed 13 years ago. At that time I have never heard of this type of cancer. I had stage 1 tongue cancer. Right side, underneath tonge. Elected to remove right lymph node for this cancer likes to move down and is so micrscopic it would not be detected. All nodes were clear. When cancer came back in 2010 my ent was schocked. After 10 years technically I was clear so they said this was a new primary cancer. April 2011 Cancer came back in neck. They did say it spread from the mouth cancer, even though margins were clear and we thought we got it all.

Right now all my nodes are clear. Last Aug had 7 weeks of radiation and chemo. Next pet scan is May 4th. Last scan was not clear. There may or may not be something in my right lung. Hope it was just inflamation.

Please stay in touch. I am here to help you too in any way I can.

Wishing you all the best.



Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.

#148481 - 04/18/12 09:29 PM Re: New to OCF [Re: ESikon]  
Joined: Apr 2012
Posts: 10
ilyse Offline
Member
ilyse  Offline
Member

Joined: Apr 2012
Posts: 10
california
Hi Elizabeth,

I also have two kids. Both boys 13 & 8. First diagnosed with cancer when my oldest was turning one. Not easy.

My prayors are also with you and you family.


Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.

#148483 - 04/18/12 09:44 PM Re: New to OCF [Re: AnneO]  
Joined: Apr 2012
Posts: 10
ilyse Offline
Member
ilyse  Offline
Member

Joined: Apr 2012
Posts: 10
california
Hi Anne,

you are correct. Schwannomas are typically very slow growing tumors. But nothing is noraml with me. Back in June tumor was 7mm by December grew to 11mm. Neuro Dr's said this was an agressive tumor and needed to be treated soon. I went with surgery because I needed to know if this was cancer or not. Thank goodness no. Next step is Gamma Knife radiation. I have to admit I do not know a lot about this yet. If anyone has had this treatment would love to hear their story and any advice.

They did say it could have metastasized, but they are unrelated. I think I am just prone to tumors.

You pose a good question. I think they just don't know.

I am not familiar with sarcoma. But I am glad you are feeling better.

All the best,
Ilyse


Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.

#148619 - 04/21/12 10:32 PM Re: New to OCF [Re: ilyse]  
Joined: Aug 2011
Posts: 593
Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 593
MA
Hello, Ilyse.

Thank you for sharing your story and emphasizing that it is so important to listen to your own body. You certainly are a survivor. Best of luck with the gamma knife. I don't know a lot about it either, but I'm sure there are some people here that could give you some advice/info.

Be well,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!
#148625 - 04/22/12 02:40 AM Re: New to OCF [Re: ilyse]  
Joined: Jan 2012
Posts: 112
braziliangirl82 Offline
Senior Member (100+ posts)
braziliangirl82  Offline
Senior Member (100+ posts)

Joined: Jan 2012
Posts: 112
br


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
#148911 - 04/30/12 10:47 PM Re: New to OCF [Re: ilyse]  
Joined: Apr 2006
Posts: 583
DM32ASA Offline
"Above & Beyond" Member (500+ posts)
DM32ASA  Offline
"Above & Beyond" Member (500+ posts)

Joined: Apr 2006
Posts: 583
Washington
Hi Ilyse,

Wow!! Good for you that you were listening to your self. I think that is something we all need to learn and remember.

Welcome to OCF. I am sure your story will help many here. Thanks..

Diane smile


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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