Dx: IDC (Aug 17, 2011), ER+/PR+, HER2-

Long-term survivor HIV/AIDS (29 years)

Hi Etherize, I'm sorry you have much to deal with and glad you had the mammo, hopefully you'll have good news with the path report and can go forward with the minimum amount of treatment. The ladies here are very supportive and I hope you'll keep us posted and good luck with your surgery!

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Thank you, Tricia!

Dx: IDC (Aug 17, 2011), ER+/PR+, HER2-

Long-term survivor HIV/AIDS (29 years)

I'm sorry Etherize but just saw your reply now, how are you doing and has your onc suggested any other treatment for you???

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Hi E,
Welcome to Komen.
Once you have the surgery and snb, your tx picture will be clear.  Aside from the shock of learning you have breast cancer is the fear of the unknown. It's like plunging into a dark cold abyss.  Once you have a treatment plan in place, you can really start fighting. But don't forget to have a pocket full of patience.  It sometimes seems that everything is moving in super slow motion.

I hope your AIDs dx isn't a complication for your surgery.  
You are already a SURVIVOR!

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

Hi my name is Holly, dx with Paget's breast cancer in June, no history of any breast cancer in any of the past generations of my family. Very overwhelmed! Not much info. to be found on my rare kind. Had insurance issues, my biopsy done June 28, results of BC on June 29, and June 30 husband lost his job. Spent $1400 to get insurance for the month of July, then after hearing the run-around from insurance companies (pre-existing), found out on July 26 the day of my surgery (Central Mastectomy) that i would have insurance the following month. Husband not being supportive, too much stress for him i guess. Did not like my surgeon, but felt like i had to rush while i still had insurance--he would give 1 word answers, etc. Asked him if i would be getting reconstruction, he said no---found out later everyone is entitled to it. My sisters say they will be supportive, but they do not understand, and i am trying not to be bothered if i hear comments like: it is only Stage I, it is not too bad, hearing the word Breast Cancer was devastating. I am finally going to go to a support group, because i feel all alone. Stress is causing me to lose a lot of sleep, and now radiation tiredness beginning. It has helped reading others posts. Thanks for listening.

6/29/11 DX age 45-Paget's Disease
7/26/11 Central Mastectomy
IDC, stage I, grade 3, 6 lymph nodes clear
mammogram, ultrasound and MRI clear
9/7/11 six weeks Rad started.

Hi Holly and welcome. I am so glad that you've joined a support group. Even people who mean well often say some really insensitive things because they just don't understand; others find the idea of cancer just too scary, so they head for the hills. It's so important to know that you are not alone--now you have a support group, and you have all of us. We've all been through this--some of us are just starting out, like you, and others, like me, were diagnosed many years ago. But there's not a person here who hasn't felt alone at times. Cancer can be a lonely disease. Please just keep reaching out and, if possible, see about finding a doctor who is more caring and communicative than your surgeon. Do you plan to look into reconstruction after your radiation is done? It's true that radiation can make reconstruction more difficult, but it can be done and done well if you have a really talented plastic surgeon. I am a walking example of that. Take good care and please let us know how things go for you. Rena

Rena age 63 California Central Coast
26-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Holly--
Welcome to the group.  It is hard not to have it bother you when they refer to you stage as not being too bad.  Any cancer diagnosis is hard to swallow regardless if it is stage 0 or stage IV.  Glad you found a support group in your area.  Did you ask your husband to attend one with you as well?  Maybe he too is overwhelmed and just doesn't know how to express it.  If you don't like your surgeon find another!  It is possible that some people are not candidates for reconstruction but if that is the case he should have told you that.  Even then I would think the best doctor to advise you would be a plastic surgeon.  When I went to my general surgeon before my mastectomy, he told me about a plastic surgeon in the group he normally deals with that doesn't even tell patients that they can go for immediate reconstruction.  When he asked him why he doesn't tell them, the reply he got was "if they wait they will appreciate the difference in their appearance more when completed".  Thank God I didn't have that jerk!!  Get all your information together.  Family is great to have around and I understand what you are saying about they don't understand.  Don't be afraid to reach out to us.  Take care of yourself.

With all that being said--the sisters here are a wonderful support group for questions and just to bend an ear when you need to vent. 

Tina    
dx 2/1/11 DCIS
Lumpectomy 2/27 results DCIS/LCIS Stage 0 ER+ PR+
Bi-lateral Mastectomy 4/26 with expanders 
6/3 Surgery to remove contaminated expander due to infection.
7/22/11 Surgery to reinsert the expander. 
10/11/2011 Surgery to replace tissue expanders with implants. 
 

Rena, thanks, did just recently speak to radiation doctor, he said that he actually prefers radiation completed before reconstruction, he said it is only lately that reconstruction is done immediately following surgery, but then he is treating more than just your natural tissue. He said i do have a couple of options, and will get me in touch with plastic surgeon. I do not know yet about more surgery, was so scared before my surgery, but would like more info. so i can make an informed decision. Still upset with general surgeon, do have a follow-up in a few weeks with him, because when he said no reconstruction-I believed him, I thought because i was having a different kind of mastectomy i was not supposed to get reconstructed, and i was not thinking of that then, i was thinking of a new diagnosis of cancer and getting it removed. (I did not know enough to ask more questions). I still do not know why he said no, did he mean at the time of the operation?
It would be such a hard decision though, i guess i have to read some reconstruction message boards, it is so hard to compare having surgery or living with what is left of my right breast for years. And then possibly getting work done on my good breast to have it match. I did mention my concerns to my sister and many times she would say her 87 year old mother-in-law did not get reconstruction from her surgery 15 years before. I had to tell her that is different I am 45, if I was a lot older, I would not think it would bother me or that i would get it fixed. thanks again, Holly

6/29/11 DX age 45-Paget's Disease
7/26/11 Central Mastectomy
IDC, stage I, grade 3, 6 lymph nodes clear
mammogram, ultrasound and MRI clear
9/7/11 six weeks Rad started.

Holly, it's a good thing to take your time when deciding about reconstruction. I learned a lot about the--the hard way, unfortunately. I ended up having it done three time--something that I could have avoided if I'd done my homework (granted, it was not so easy back in 1988 without the Internet) and really paid attention to red flags with the first two surgeons I chose. Luckily, for me, three was a charm, and I found an excellent surgeon who was able to give me a really good result despite the damage done by the other surgeons. So, I think the bottom line is to really look around, ask other women who they used, and not to be hesitant to really interview potential plastic surgeons. Remember--you're buying a service from them.

I'm going to paste in below some of my thoughts about finding a plastic surgeon. I wrote this a while back and repost it from time to time. I hope there's something there that you'll find useful.  Take care.

Every so often I post something about this because it's so important and I want those of you who are newer to the board to read it. Some of us have had horrendous experiences with reconstruction. I don't think it's the norm, thank goodness, but it still happens. Lately, there seem to be more posts than usual from women who've had terrible results and are not sure where to turn. It took me three tries to finally get a result I am happy with. And, as my newest and wonderful plastic surgeon said, if I'd found her the first time through, I'd look much better than I do. So, how do you find a great plastic surgeon? I don't know of a foolproof formula, but there are some things you can--no, should--do. 1) Don't assume that you have to go to the one who was recommended by your general surgeon or other doctor. This might be a good way, but don't assume that the ps will be excellent just because your other doctor sent you there. 2) Don't choose a ps based on location. Yes, it would be more convenient to have your surgery done in your town, but you want the best, even if that means traveling there. My first botched surgery was in my town; my second botched surgery was 80 miles away; and my successful surgery was 120 miles away, in San Francisco. I had a hip to hip incision, drains, and the works, and I had to travel back and forth once a week for a while to see my ps. It was difficult, but it was worth it. 3) Ask the women here for recommendations. Ask other women you know for recommendations. Ask what they liked about the doctor. Ask about their results. Ask if you can see before and after photos. 4) When you interview (yes, interview! You are hiring the doctor, and you're in the driver's seat) the doctor, find out how many of the procedure you're having he or she has done. This is crucial. It doesn't guarantee excellence, but it does at least indicate experience. Ask to see all available before and after photos of his/her work. Ask if there are any previous clients you can talk to about their results. Naturally, they won't steer you to anyone who was dissatisfied, but you'll get a sense of how open the doctor is about letting you review his/her work. 5) Use the Internet. Research the doctors you're considering. See if you can find any complaints against the doctor or any positive comments. See if your doctor has written anything or been interviewed. When I chose my ps in San Francisco, a Web search told me more about her training (she had trained with the man who pioneered the tram flap procedure), her attitude toward plastic surgery, her understanding of the what the natural female breast looks like (she did a study at Stanford using volunteers who had their breasts measured and mapped).  

  

Rena age 63 California Central Coast
26-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!