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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at the end of the interview, she said 'a lot of things have happened in breast cancer since he studied', implying he is out of date.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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Eileen Offline OP
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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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Eileen Offline OP
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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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