PA ladies diagnosed with BC??

MamaM

looking to find someone in PA?  I was diagnosed with ILC on 10/3 & have very supportive family members however would love someone to talk to that understands what I'm going through.....I live in PA.  41 yr old mother of 3.

goldenpawsKim

Hi MamaDarrling - I"m from PA and also recently diagnosed on 10/9.  I'm 45 with 3 kids too.  Boy, what great timing, uh?  I have seen one surgeon and getting a second opinion on Thursday.  Are you from the Phila area?  I'm going to Penn for my 2nd opinion.  I'm also having a MRI done on both breasts this Wednesday just to check things out. As of right now, I'm Grade 1 w infiltrating ductal adenocarcinoma. They are recommending a lumpectomy with radiation and possible chemo -- that scares that crap out of me.  Let's try and stay in touch .....l hear you ....  I have a lot of support here at home (my kids do not know yet) but its always nice to talk to someone going thru the same thing   

knmtwins

I live in central Maryland, so sorry...  but 49 year old mother of 10 yr old twins and a 7 year old.  Have you guys had core biopsy?  If HER2, or triple negative, there is a good chance chemo is coming, but I'm not a doctor.  It sucks, but is doable, even with kids.  My mom had cancer in the 70's, you didn't talk about it then, I remember knowing something was wrong, bit WRONG.  Whispers, closed doors, etc.  I was 10, I was realy scared, thought my parents were going to divorce or something.  So, my husband and I sat the kids down and told them, when the mammogram showed the IDC.  Stress removed from us about keeping quiet, and they can ask questions.  The twins saw a therapist a few time, so they knew they could talk to others if needed.  Also, went on my library's website and ordered every 'mommy has breast cancer' book and went to the link for the state's lending library and got those too.  I read them FIRST.  Some don't have the story I wanted to tell them, so they were returned.  I found that the ones more appropriate for little children, worked well with my older ones as talking points.  Read slowly to them, even though they can read.  Look at their faces and see if you should stop and question.  My son thought he 'gave' me cancer, because he was bullied in school and that gave me stress, which he thought gave me cancer.  

One other thing, one post, someone wrote, breast cancer is a marathon, not a sprint.  Very good to remember at this beginning, until the pathology report is back with ER, PR, and HER2/neu, you don't know.  Also, the size can change between the MRI and the Mammogram, no that it is growing that fast, but that radiologists can see things differently, especially if you have dense breasts.  Mine went from 1.5cm to 2.9, but I have dense breast tissue.  Get second opinions, ask questions, put it all together, then come up with a plan.  Also, go up to the top, right side, My Profile.  Update it so people know what is going on with you.  Keep adding as things happen.  Goldenpaws, I'm thinking you may be Stage 1 because Grade is normally in reference to how aggressive the cancer is.  In the beginning I had all my diagnosis info in there, mamo date, mri date, biopsy date, etc.  As I continued with the marathon, I'd edit, because those dates didn't matter anymore, I was now Stage II, Grade II-III, ER+ PR+ HER2/neu +++, presurgical chemo...  

Oh, and always ask for your images, tell them at check in that you want them, then tell the tech.  You will probably have to wait and extra few minutes for the images, and you will get them on a CD.  Ask if they have a computer login for you to read your results.  If so get that, then you can keep checking to see what is going on.  Sometimes the report is posted after your doctor's office closes.  This way you can see it, and not have to wait on pins and needles all night, or, you don't have to look at it, but you can access it and print it, for second opinion doctors.  Oh, and if you live in a large enough area, go to doctors who work at different hospital's for second opinions.  This is because most hospitals have tumor boards so they are all kinda on the same track.  Now, the NCCN guidelines are what they all follow, it is a flowchart of what to do, but there is some leaway.  Also, I loved my 2nd opinion oncologist, did not like the first guy, but didn't want to drive an hour for chemo, so found another one where I live, so don't drive as far, but don't see who I didn't like anymore.  

Siren40

I'm in PA too (philly). Just diagnosed 10/15 with stage 1 IDC. Slightly HER 2 so I'm looking at chemo, rads, and lumpectomy. 40 year old mom of 2 boys, age 10 and 7. Looks like we are all starting together!

Janetanned

I'm also from the Philly area and received all treatment through Penn.  I work in West Philly, but live in Delaware County, 59 with three children (young adults).  As my signature states, I am three years out from my original diagnosis. 

Goldenpaws - I think I have been through every department at Perlman (Penn).  If I can be of any assistance please just ask.  My overall experience at Penn has been very good.

kamm

I'm also from Pa. Chester County. Where are you from mamadarrling?

FireKracker

I'm from PA too

A small town called Honesdale,outside of Scranton..

I just celebrated 5 yrs.since I found my lump

Anyone live near me?

LMVerna

Hi, I am also from PA.  Montgomery County.  I'm 52 with 3 kids (21,18,14).  I had surgery, am almost done with chemo, and then will start radiation.  Also need to finish the reconstruction process.  I had my surgery/treatments in the suburbs.  Did second opinions for chemo and radiation and MD Anderson in Camden and Fox Chase.  Feeling frustrated because everything with me tends to be in "gray areas" so I have trouble getting concrete answers from the doctors (some are worse than others). I'd be happy to share any of my stories with you. 

Janetanned

Hi LM -  I grew up in Montgomery county and have many cousins still living there.  I wasn't so 'gray' but still couldn't get concrete answers for some questions.  I think Drs are afraid to say anything too definite, since there are no sure things when it comes to BC.  It was obvious that I needed chemo, rads, and AIs with 4+ nodes, so that is what I did.  I think you just have to go with your gut and do some research on what is right for your situation.

Good luck with rads.  I found that it wasn't too bad.  I worked throughout treatment and my skin held up pretty well.  Hopefully yours will as well. 

jc254

I'm also from Chester County and was treated at Penn.  I'm 54 with two college aged kids.  Finished active treatment about one year ago and doing great. 

FireKracker

they finally caught the 2nd.most wanted man today

Eric Frein

From my neck of the woods

Maybe now my LE will quiet down

Janetanned

I've been following that story!  It must have been nerve-wracking going about your daily schedule, not knowing where he was.  I'm glad it is finally over. 

Lovemysons

Hi everyone - I'm from a small town north of Harrisburg, PA.  I received my care at Penn State Hershey's Cancer Institute/Medical Center.  I was diagnosed (4.5 cm tumor, triple+, IDC) in February of this year at age 39.  I turned 40 in May and have two sons - 12 and 8.  I received 6 cycles of neoadjuvant chemo - TCHP beginning in March and had a BMX in September with DIEP flap
reconstruction/expander placement (due to one DIEP side failing).  I'm happy to tell you that after chemo there was only a 1.1 mm spot of the IDC left in the breast tissue that was removed.  Also, they had biopsied a lymph node prior to chemo which came back malignant but at the time of surgery they removed 7 lymph nodes and all were negative so chemo did it's job there too.  I must say though as much as I hated chemo and the side effects, I am truly thankful that the medicine is available - without it, who knows where I'd be today.

 

goldenpawsKim

Thnx for the note, JaneTanned. Had my lumpectomy and sentinel node biopsy on Tuesday at Penn. 2 days out and I'm feeling pretty good. Just very anxious about the final pathology report. The surgeon said the surgery went very well and my lymph nodes look normal. I guess that doesn't mean anything until I get my final report. Nice to see some people in the Philadelphia area who have gone to Penn and got good results. keeping my fingers and toes crossed for good news.

Bren58

I am also from PA and my BS and PS are both there. I did chemo closer to home because sometimes it takes me 2 hours to get to Philly due to the Schuylkill expressway traffic. I am on the Chester County/Berks County border.

Siren40

golden, I had my lumpectomy and SNB Tuesday as well but I was at Einstein. I was so happy with how easy everything was. My surgeon was very confident as well. She said the tumor was the size they said (1.5 cm) and my nodes looked good so she only took 2. Of course I'm still nervous about the path report too!!

tgtg

Not quite in my 40's--was diagnosed at 71 and finished treatment at 72--mother of two grown sons and grandmother of 3 girls. Just had my 2nd-year post-surgery mammo today and had nothing but good news. I'm from eastern Chester County and chose to have my surgery at Paoli but had my rads at Lankenau with Dr. Marisa Weiss. (Both the surgeon and rad. onc. trained at Penn). In the Delaware Valley we are blessed with fantastic medical resources and the opportunity to get high quality care. Good luck to you, and know that people here will respond to your questions and just listen to any venting you need to do. TG

Janetanned

Bren - Were you aware that Penn has a campus at Valley Forge?  My daughter sees all of her drs at that location and is happy with this location.  That campus opened after my treatment so I didn't have that as an option. Perlman worked out for me though.   I work in Philly, so I try to schedule appointments for before or after work.  I know what you mean about the Schuylkill Expressway!  It is never a good ride!  Fortunately, I can use the train, 95 or back roads to get into Philly.

Golden - I'm keeping my fingers crossed for you and clear nodes!  Sounds good though!  Do you know if you will be doing radiation?  If so, buy your own hospital gowns.  The ones provided at Perlman are sketchy! 

Siren - Sounds like good news for you too.  I'll keep my other fingers crossed for you and clear nodes!  Were you at Einstein in Philly or at the new facility in Montgomery County?

Tgtg - We certainly are very lucky to have so many excellent medical facilities in this region!  Over the years I've been treated at Jefferson, Pennsylvania Hospital, Presbyterian Medical Center,  and Penn.  My parents liked Lankenau and Bryn Mawr.  My mother in law had surgery at Paoli many years ago.

jc254

I never really appreciated the abundance of quality medical facilities in this area until I was diagnosed. FYI, although I had my surgery at HUP in the city, I was able to schedule both chemo and radiation at Penn Valley Forge.  It was much more convenient and a nice brand new facility.  I highly recommend it to those looking to avoid the traffic congestion and parking nightmares of center city.  I also just read that Penn is opening another facility in the Oxford area of southern Chester County.

LMVerna

Siren: did you have it at Einstein in philly or at Einstein Montgomery. I had my surgery and chemo at Einstein Montgomery and am starting my radiation there next week. I have been very happy with it. I did get second opinions for my chemo and radiation at some of the bigger cancer centers and they completely concurred with my docs at Einstein.

Bren58

Jane, I do know about the Valley Forge campus, but neither of my doctors have offices there. I did see a pain specialist there after my surgery though.

We definitely are very blessed with the many quality medical options we have in our area.

Mamadarling, I was 41 with 2 kids when I had my first DX. I don't think BCO was around back then, but there was another online forum that was a huge help. Even though family and friends are a great help, no one "gets it" like the ladies here.

kamm

The Penn Valley Forge campus is where I had my pre-op stuff done for my oopherectomy. It was nice not having to go into the city to have all of that done. Just the day of the surgery.

tgtg

jc 254--

Are you a friend of Trevor, Grant and Mallory's mom? What you wrote rang a bell, including the UPHS facility at VF. Shortly after my surgery she told me about your dx, and your dates match that timing. Just wondering! If you are, this board gives new meaning to the idea of sisters in bc! I, like you, am doing fine according to my 2-year-out mammo yesterday, .TG

Siren40

I actually had my surgery at Einstein One which is a satellite outpatient center. I will have my chemo there as well which is nice because it's only 5 minutes from my house. As for radiation, I'm not sure yet. I'm equally distant from both hospitals so I can go to either.

I've been so impressed with Einstein so far. When you have penn, Fox Chase, and Jefferson it's easy to forget them. My MO is a colleague and good friend. When I was diagnosed I went right to him. He's affiliated with Fox Chase and Einstein but set me up with all Einstein docs. I had no idea Einstein has built such an impressive breast cancer program. They are all as sharp as can be and each one is nicer than the last. I'm so happy to be with them.

jc254

tg, small world!  Yes, their mom was part of my wonderful support system while I was going through chemo.  She helped with the cold caps so I could save my hair.  I also remember her speaking about you.  Nice to "meet" you. : ) 

jarpsyd

Hi all - hope its OK to jump in here.

I just turned 45 and have an 10yo and 8 yo daughter and live in West Philly near the Delco and Montco lines! We have only lived here for a year...I had a routine mammogram that showed two areas of microcalcifications, which were determined after further images to warrant biopsy. The biopsies came back yesterday with DCIS/ IDC stage 1 (one area is within the duct walls, the other area has breached the duct walls). The receptor info is not back yet. The two area are about 3cms apart in a line under my nipple heading toward the chest wall. At this point, that is all I know...and that I need to choose between a lumpectomy and mastectomy ... and that I have appointments with the chemo and the radiation and the genetic testing people...I have no family history of BC though some other cancers in older adults in my extended family ... I have no other health problems.

My overarching question at this point is whether I stick with the team I was assigned when my mammogram came back funky - Dr. Aggon at DCMH/Drexel Hill, PA - who I have really liked and has a good reputation I think - or do I get in line at Penn (the best-know cancer hospital in the area) for treatment there? And how do I make that decision? I just want to get going on treatment - but I don't want to regret anything either....

Thanks for any insights!

tgtg

Sorry you got this news, especially at this time of year. (I really understand, since I got the final word 4 days before Christmas 2 years ago!)

Since you live in W Philly near Montco and Delco, you might want to consider Lankenau Hosp's breast team. Lankenau is part of the Main Line Health System, has ties with both Jefferson and Fox Chase CC, and has some highly regarded breast specialists on staff, including BCO's Dr. Marisa Weiss. Many, including her, trained at Penn, and Lankenau/ML Health is a lot more user-friendly than the megalithic Penn. Good luck as you navigate through this "speed bump" in your life. tgtg

Janetanned

I'm a little partial to PENN since I was treated there and am an employee.  I received great care from start to finish.  There is also the potential to be included in a study or two when you are being seen by PENN drs.  Originally, I was being considered for a vaccine study.  Unfortunately since I was diagnosed with two different cancers, I was no longer eligible.  However, I think Lankenau is another good option.  It can't hurt to get a second opinion.  If the recommended treatment plan is the same, you might be more comfortable at Delaware County.

QueenSuzu

Hi! I am 60, live in the Lehigh Valley and was diagnosed 10/8, had double mastectomy and started reconstruction 11/7. Stage 1a and do not need chemo or radiation, extremely thankful for that. My Drs are all in St Luke's Hospital system and have been fantastic. Prescribed to take anastrozole with a baby aspirin. Reading how some have suffered with the ses have been discouraging but I have a very positive attitude and want to do all that I can to minimize any ses I might have. I am also dealing with osteoarthritis in my right knee for which I have had some treatment but have not experienced much relief. Had started the anastrozole two weeks ago but over the past two days my knee hurt so bad I could not walk! Do not think ses from the anastrozole would have started so quick, but I temporarily stopped it and will be calling both the oncologist and ortho dr on Monday. I go back to work in two weeks and would really like to have this under control as I will have been out a total of 8 weeks. Altho, my bc diagnosis was a shock to me, I have done very well, it is the stupid knee that is interfering with my life-lol! Happy to have found this board and look forward to giving and receiving encouragement to all.

Chloesmom

Am also from PA. Live in York county south of Harrisburg. Went to York for Dx and down to a Baltimore to Hopkins for 2nd opinion and treatment. Just 12 days since BMX. All tests showed good breast ok but Hopkins agreed to do both and found atypical lobular hyperplasia in biopsy. On the mend now. We have a wonderful support organization here in our area but it serves all of PA snd MD. It is called HOPE.