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#117682 06-09-2010 11:09 AM
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Eileen Offline OP
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Just got a call from the breast cancer doctor this am. The biopsy came back very early breast cancer. I have an appointment with the local surgeon tomorrow to discuss treamtent. Had I any inkling that this would come back positive, I would have never gone to this doctor because I don't like the hospital she is associated with. My GP, both radiologists, and the breast cancer doc all said these small calcifications rarely come back positive. How did I get so lucky?

I'm not having a normal reaction to this. I have no fear only RAGE. I haven't even cried. How the hell did I get this one? Other than my sister who spent many years on HRTs, no one in the family has ever had breast cancer.

Treatment is apparently lumpectomy and possible radiation. I hope I can skip the radiation part. My gynocologist called me this am also and gave me the name of the top surgeon at Jefferson in Philly so I may get a second opinion there. I'm not looking forward to surgery being total laryngectomee. I have a lot of mucous and everyone keeps trying to put the oxygen mask on my mouth. I more afraid of dying from a screw up in surgery due to the trach than the breast cancer.

To add insult to injury, my nice new one year old computer can not connect to the internet so I cannot research this from home. Spent over an hour on the phone with Verizon switching cables etc and it does not appear to be the modem as I can connect to Internet with both cables to office laptop. So it is either software or modem connection on back of computer. I doubt it is the latter and no idea how to diagnose or fix the former. Who do I call? The GEEK squad?

If any of you ladies have been down this path and can give me an idea about this lumpectomy or point me to a good forum, I would appreciate it. I will be in contact with Kris. All help appreciated.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Shit Eileen that sucks.

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Eileen,

Having just gone thru breast cancer with 2 employees in the past 2 years I think you need more tests to determine whether or not the cancer is hormone receptor positive or negative, the tumor's genetic signature of inherited BRCA1 or BRCA2 mutations and especially it's HER-2 marker before a definitive treatment plan can be recommended. Just like with oral cancer you need to be treated at a CCC.

I'm sure I have some articles laying around somewhere if you want me to look. Also research the web.

Unfortunately you know how to approach this.


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.
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Eileen Offline OP
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Thanks for the suggestions on the tests David. I remembered there were some kind of markers but couldn't recall their names. Unfortunately I know zilch about breast cancer and with my home computer down and suddenly getting busy in the office, I'm not certain how much research on the web I can do. If you can easily find the articles, I would like them.

I'll see what the doctor has to say tomorrow. She is pretty no nonsense and I like her, just not the institution she operates at. Also, it is not a CCC. I will see about getting an appt in Philly after I talk to her. I don't know how aggressive this is. If I had be diagnosed with any other cancer, I don't think I would have been surprised, but this one just floored me.

Your right Liz, this SUCKS, but hopefully I'll get by this too.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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This sucks!!!! I am so sorry about your news. I will be praying for you.


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
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Eileen Im so sorry to hear you are going thru this. How I hate cancer!!!! I will keep you in my prayers for a full recovery.


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
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Eileen

You summed it up. Life just ain't fair. I'm really sorry that you have to deal with more $#!T.

Karen



46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Eileen, You must be in shock. I'm so very sorry. It sounds like it was caught in the early stage-thank God. I'll be sending out positive thoughts and prayers to you. hang in there-you are a tough cookie.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Eileen,

One or maybe a combo of those tests helps to define the aggressiveness of the cancer and that is used with everything else they think they know about your cancer to develop your Tx plan. For example both of my emplyees had essentially the same type of cancer, caught early, ductal in situ but because of the tests one was told no breast removal, no rad, chemo only and the other had both breasts removed, chemo and now they are discussing rad. The first one is going on 2 years post Tx.

How can I get these articles to you?


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.
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Eileen Offline OP
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Thanks for the prayers and good vibes everyone.

David,
Since my home computer is down and I can't reply on my office fax, you will have to mail them to me. I will PM
you.

Thanks,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Eileen,
I know you've gotten my private posts, but wanted to you and others to know that once you get the diaognosis of breast cancer the docs have tons of material and background info to pass on to you at your first informational meeting. I had a 4 hour meeting the first time I met my docs: 1 hours team nurse, 1 hour oncologist, 1 hour radiaologist, 1 hour surgeon. Breast cancer seems to be more informationaly organized complete with pink bags to carry to stuff home in. Oral cancer not so much info. I think they gave me one very small pamphlet! If I hadn't had this forum for find out information I would never left my bed!!

Treatment really is 180 degrees different that what you've been through!! You CAN do this, too! Love, Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
Kris #117770 06-10-2010 09:05 PM
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So sorry to be reading this Eileen!


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!
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Eileen Offline OP
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The appointment did not go well yesterday. We spent more time talking about what complications my permanent trach was going to cause than what kind of problems I was going to have from the lumpectomy. And when I mentioned going to JEFF for a second opinion she almost threw me out. She asked who I was going to see, and when I told her, she laughed and said 'GOOD LUCK WITH THAT ONE'. I said 'what is that supposed to mean?', she refused to say anything else. When I asked her again at the end of the interview, she said 'a lot of things have happened in breast cancer since he studied', implying he is out of date. According to my gynocologist who recommended him, he is nationally known in the field. Who knows, but I don't want to go to a doctor that another one has questions about. I asked for a referral to HUP and she said she knew no one. I find that hard to believe. She did her residency there. I explained to her that I had no problem with her as my surgeon, that I disliked the hospital that she is operating out of because I had problems there before. She seemed to calm down after that and explained it is an outpatient procedure and only lasts two hours so I wouldn't be spending much time there.

Anyway, what I know. Tumor is less than 1 cm. so very early stage. Biopsy says 'ductal carcinoma in situ with high nuclear grade'. High nuclear grade is not good. I need to move fast. The biopsy of the calcification says no invasive carcimoma but the biospy of the breast says 'focus suspicious for microinvasion'. Not good. May mean it spread beyond duct.

When she called me with biopsy results, she told me very early stage, lumpectomy, probably no radiation and NO chemo. When I got there yesterday, she was talking about lumpectomy along with removing several of the lymph nodes in the underarm followed by radiation AND chemo. I was totally confused. She made no mention of BRAC1 BRAC@ or HER 2 tests and I forgot to ask.

They gave me a book to read on breast cancer. It said they test for lymph node involvement with dye and only remove them if they show involvement. I thought she said she would just remove them. I know she did not mention any dye. I have to call her nurse on this. If they take the lymph nodes, it sounds like the recuperation is worse than the neck dissections. No baths, no hair washing, no deodant, no moving arm, no this, no that for 6 weeks. That arm is already conpromised. I don't need this again unless absolutely necessary.

I have a call into HUP to the surgeon who did my laryngectomy for his recommendation for a breast cancer doc. His secretary just called back and said he is out today and will call me in Monday. She also said he could probably expedite an appt. I also have the name of my sister's breast cancer surgeon at Hahnemann. Problem is, I need to move quickly so I may be stuck with this local surgeon and hospital. Will keep you posted.

I think it has finally sunk in. I'm no fun to live with right now. Sorry for the tirade. I need to vent.

Take care,
Eileen




----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Sorry that your appointment didnt go so well today. Sounds like the doctor has some jealousy and professionalism issues. Hope you find another doctor very quickly that will be more patient and explain things in more detail. Dont get pressured into something that you arent comfortable with. Its the same as with oral cancer, a cancer center is the best place.

Best of luck with everything.


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
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I did call the nurse. She said because of the 'suspicion for microinvasion' dr will take one lymph node from the arm pit and then run the dye test. If that's all she has to take, then it should only be a few days with no bath and should not impact arm use.

I know I should be at a CCC but there may not be time for that for the surgery. If the damn doctors and radiologists weren't all so certain this would be benign, I would have gone to HUP in the first place. They all said they saw no reason for that. I should have known better.

Take care,
Eileen



----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Eileen,

I totally agree -- life just ain't fair! I'm so sorry to hear you are now facing another cancer. I'll keep you in my prayers.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Eileen,

It's very common for them to take the sentinel node (first in line of defense) and see if it's cancerous. If it's not then they don't go any further. If it is then then go further up the line. The biopsy "ductal in situ" means it hasn't broken through which is the best you can ask for, probably a Stage I, absent nodal involvement.

I do agree with your gut feeling that this "doc"(?) may need some professional help herself and I really don't think I could trust her but that's just my opinion.

Glad you are getting your arms around this thing and knowing you, you will be an expert really soon. With that said I have 2 people standing by with recent experiences that will answer any questions you have. If you want to PM them I'll get them answered.


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.
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Eileen,

If it helps you some. I had the same procedure in 2007. It was a snap compared to Oral cancer. I did the radiation after the surgery. So far so good. No new problems.

I know what you are feeling.. you did not need this on top of the other.

Take a deep breath you will get through this too.
Take care
Diane



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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Eileen, so sorry you are having to go through this on top of all you've been through. Sounds like you've got some people here who can give you good advice. I will be keeping you in my prayers - you will get through this. Be positive....

Nancy T


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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Well if it weren't for bad luck, I wouldn't have any luck at all.

I went for my 6 month routine check up with the cardiologist on the stent in my carotid expecting to get a clearance for the lumpectomy, and found out I now have a another better than 90% blockage ABOVE the stent he put in in 2008. I am now scheduled for an angiogram tomorrow and another stent either tomorrow or Friday. I am hoping he can do it all in one procedure because lying immobile for 10 hours after it is no fun. Plus I don't want the second leg bruised up too. He also said he won't clear me for lumpectomy for two to three weeks and that it needs to be done on Plavix and under a local. Doctor at Princeton wants me off Plavix for 10 days and not under a local, so that option is out.

Went to HUP for second opinion same afternoon. He is willing to do lumpectomy under local and on plavix, so he is the guy. HUP is going to do a HER2 test on the biopsy and if it turns out positive, which I doubt it will, there is a clinical trial for a vaccine they make from your own cells that he wants me on before he does the surgery. This vaccine is supposed to shrink the tumor and then he does lumpectomy. His goal is for me NOT to need radiation.

Now you are going to love this. If this breast cancer is HER2 negative which means it is triple neg breast cancer, then he thinks was probably caused by scatter radiation from the XRT treatments I had for H&N cancer in 1997. Good old radiation, the gift that keeps on giving. For this reason, he would like to be able to avoid me having more radiation. He also wants a breast MRI to make certain nothing is going on in the other breast. I get that sometime next week. Can't wait for those results.

So I'm off to Hahnemann tomorrow for angiogram and stent. If I don't post anything for a few days, don't worry. I'm either recurperating at the shore or off getting the MRI.

Sorry for the novel but since both these conditions may be a side effect of radiation, this really is about H&C cancers.

Send some good vibes my way tomorrow and Friday. I'm gonna need 'em.
Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Oh Eileen...This is unbelieveable. I am sending white lights and positive vibes your way, also praying... My mom's lymph therapist did a lot of amazing work with ladies who had had breast ca. She is right in Langhorne, by Oxford Valley Mall. Having worked for her for a stint I can tell you most surgeons were setting there patients up with appts immediately. To hear that this was probably caused from rt is deeply disturbing. I am so very sorry. My aunt had breast ca and told us then that she thought it was from all the xrays she had when she was younger. She was never certain. Eileen, you will be in my thoughts. much love and hugs to you. Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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So sorry that you are having to deal with all this crap.


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.
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Eileen, best of luck the rest of the week with your appointments and procedures. You are so right that it just isnt fair!!!!! Especially the part about the cancer being from scatter radiation from your head and neck rad treatments.

Ive heard about the treatment you wrote about. I read an article about the trial where it uses a persons own cells to target their cancer.

Hope everything works out for the best and you can get to the shore for a much needed rest.


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
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Eileen, I'm so sorry for all your problems. It's just not fair! I hope you can do some recuperating at the beach. I'll be keeping you in my prayers.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Eileen,
You are continually in my prayers. Have hope and fight like hell! - Love, Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
Kris #118507 06-24-2010 04:56 PM
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Sending lot�s of good vibes for both days Eileen.
Good luck for the procedures and tests.
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #119393 07-14-2010 11:41 AM
Joined: May 2002
Posts: 2,152
Eileen Offline OP
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Geez, I don't believe I didn't post anything after I had the stent put in, but then I only worked two days last week and this.

New stent is working fine and they only almost killed me twice, once when the doctor said I needed oxygen and the kid proceeded to put it on my nose and couldn't figure out why I was struggling against it (I'm a neck breather) and once when they were trying to get the artery to clot and put too much pressure causing my BP to drop to 60/33 and me almost pass out cold. It's called vegalizing (sp) and I have no clue how dangerous it was. Liquids reversed the problem but dr did indicate it might have been the reason I felt so wiped after this procedure this time.

Results of MRI biospy not good. Hopefully much of it is false positives. Less than 1 cm on right now shows as 7 cm and it also shows possibility of something less than 1 cm in left. HER2 test negative so I am Triple Negative for this disease. Now I know how you folks who don't drink, smoke, and are HPV negative feel.

Surgery is tomorrow the 15th at some unknown hour, lumpectomy on right, surgical biopsy on left. I asked for afternoon because I have a lot of mucous in lungs in the am. So naturally they scheduled it for first thing in morning. Dr.'s nurse was going to try to get it moved but it is hospital policy to do these first thing in the morning regardless of the patients problems. I will be under a local but will be out cold so hopefully they get the oxygen right this time and have a someone who knows how operate a suction machine. If they kill me, I told hubby to 'sue the pants off them' and donate proceeds to various animal funds. I guess I better add OCF to that list.

I plan to take Friday and Monday off also so will try to post next week when I return to office.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Eileen, Im sorry to read about the errors the hospital did to you. Tomorrows procedure will go smoothly. They already messed up enough! Please post an update when you get thru this. Or have your husband post one tomorrow for us. You have been on OCF for a long time and are well loved here. We all worry about each other around here. I will keep you in my prayers.


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
Joined: Aug 2007
Posts: 1,301
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Christine has just said it all Eileen!
Will be thinking of you and all that you are going through tomorrow. Your sense of humor is still in tact and will be looking out for you or your husbands post on the outcome.
Love
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #119450 07-15-2010 12:13 PM
Joined: Apr 2007
Posts: 794
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Eileen-
Thinking of you...
Thanks for the email; I was so concerned.
Love,
D.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Eileen Offline OP
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As promised, I survived another one. Sorry for the novel but I haven't time to edit it.

Hospital report as promised. Had to report at 7:00 am for a surgery at 3pm which seemed ridiculous at the time but the procedures that were supposed to take an hour in the am took 3 hours and 20 minutes leaving poor Charlie waiting in the waiting room with no info on the delay wondering what was up.

I was to have an MRI on the left and a wire probe inserted to mark place for dr to do biopsy. They had to do the MRI TWICE and then she missed with the probe the first time and had to that again also. Then off to get a mammogram of the left. That took 4 takes before they got it right.

Then off for another mammogram on right and two probes for surgery. They must have taken 10-15 shots before they called in another woman to try to do the mammogram. Took her a half dozen shots before she got it right. So now we place the needles and take more pictures. I�m still on plavix and aspirin per my cardiologist orders so now I�m standing there with blood dripping on the floor while they try to get these pictures. B neg mind ya so don�t waste any of it. Finally get bandaged up and sent back upstairs to wait for surgery.

Surgeon arrives around 2:30 and first words out of his mouth were: �The radiologist who did the left says she doesn�t think the probe is in the right spot, but don�t worry, I�ll work off the MRI�. I said WHAT? AFTER TWO attempts she still got it WRONG? Unbelievable and I�m at one of the top CCC in the country.

So surgeon draws pictures on my breasts as to where he will cut. I�m not happy with his plan, but time will tell, Anesthesiologist arrives and I have never been so happy to see that man in my life. He has a lot of white hair and looks and acts like a friendly grandfather. I was so afraid I would get a freshly minted one, I could have cried at my good luck. This guy actually understood what a neck breather is and all the complications it might present. I went to sleep peacefully and awoke 2 hours later in no pain and only slightly sore. They fed me apple juice and threw me out 45 minutes later. No shower for 48 hours and wear bra for 72.

I had hoped to go to the shore for 4 days to recover but that didn�t happen. The night of the surgery, my heart pounding in my ears at a normal rhythm awoke me at 2am and kept me awake most of the night. Hospital called at 10:30 to check on me and said to go to GP for heart problem. By the time I saw him at 2:00 pm problem had stopped but I was bushed. Hospital now says it was a reaction to anesthesia.

Went to the shore on Sat but had land breeze during day all weekend so it was miserable with no air conditioning. Came back Monday am and went to work in frustration. At this point, still swollen and sore but no pain. Won�t get pathology for at least 10 days from surgery. Follow up appt on 28th at 4pm. I�ll let you know when I find out.

Thanks for the good vibes and prayers, they apparently worked.

Take care,
Eileen



----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Jul 2006
Posts: 388
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Hope your next trip to the shore is a "real breeze"! You have had a tough fight there, Eileen, with lots of battles in the war, but you can do it because of a knack for a positive spin and a sense of humor, even during the set-backs. Prayers from one animal lover to another. Hope each day finds you in less pain and more energy and good news!


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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Eileen Offline OP
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Hi Guys,

Pathology report was good news and some not so good news. No cancer in left breast. Right one is ductal in situ with NO invasive tissue (YEAH) however the margins on two of the 6 sides are only .15 cm rather than .2 that is recommended. Dr wants to do another lumpectomy to get margins of 2.0 cm if I don�t do radiation or I could do 7 weeks of radiation. I don�t think so if I can avoid it. I am to have a mammogram in 8 weeks and then he will decide whether to do the surgery depending on whether any calcifications still show on the mammogram. I made an appt with radiologist who did my previous radiation to discuss this and see if she thinks that the cause of this cancer might be scatter rads from the 1997 radiation. I'm too tired for all this.

We head to Saratoga for horse racing Tuesday Aug 3-11 so will be off the board. Thanks again for all your support.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Jun 2007
Posts: 10,507
Likes: 7
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Eileen. Congrats on the good news. Im hoping you can have another surgery to take care of getting bigger margins. Good luck with your radiation appointment. Dont be surprised if your rad doc wont give you a clear answer. I would be amazed if they would tell you that your cancer was due to something they did. A cause isnt something that will help with the final outcome anyway. Wishing all goes well with everything.

Have a great trip to the races smile


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
Joined: Feb 2010
Posts: 235
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Hi Eileen, just had a chance to check in here and read what you have been going through. It sucks that you have to deal with this. But I was so impressed with your attitude and your strength in advocating for yourself.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
Joined: May 2002
Posts: 2,152
Eileen Offline OP
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Hi Guys,

I promised you an update after I saw the RO so here goes.

Went to see the RO that did my rads for the oral cancer unknown primary in 1997 and she said that there is less than a 1% chance that this breast cancer was caused by scatter radiation. She was less than delighted to hear that I have been having a yearly, and sometimes more often, CT scan of the chest and thorax and suggested that the pulmonary doctor use chest xrays unless CT absolutely necessary. She said that the government is going to issue new guidelines on CT scans.

As far as the breast cancer and needing radiation, there are 3 guidelines, size, grade and I think margins. I flunk both size and grade. Mine was 2cm and they want .5 cm or less. Mine was also high nuclear grade which is not good. However, she said that since mine does show up on mammograms and I get mine regularly, that she feels I can skip radiation this time and will use if I have a reoccurrence. Chance of reoccurrence without rads is 16%, with rads 8% and then you can�t have radiation again. So as long as mammo on the 8th is clear and he gets clean margins of 2cm on the other 2 sides when he does next lumpectomy, I am going to skip rads this time and hope for the best.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: May 2002
Posts: 2,152
Eileen Offline OP
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Mammo on the 8th was clear so will do another surgery on the 16th to get clear margins on the other two sides. If the path comes back clear, then no need for radiation. I am Stage 0.

I keep reading horrible things about Triple negative breast cancer and most articles said you need chemo but they don't give staging or type so I asked the surgeon. He says chemo is only needed for invasive breast cancer, not ductal in situ. Phew. missed that bullet. He also said to ignore all the horrible stuff I'm reading about 3N breast cancer as it does not apply to ductal in situ. Apparently 3N ductal in situ is a very rare, less than 5% are 3N. Kinda like my unknown primary the first time round.

So next Thursday I climb on the table and then hopefully go to the shore Friday thru Monday eve. I should be back to work and on the board on Tuesday.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Sep 2006
Posts: 8,311
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That's great news!!


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.
Joined: Aug 2007
Posts: 1,301
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Eileen,
You deserve a break after all you have been through. Fantastic news from the Mammo and all the very best wishes for the surgery on the 16th to get those clear margins.
Always great to have something to look forward to so hope you make it to the shore to recuperate an relax a little..


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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