New Jersey/NYC/CT/Eastern Pennsylvania ladies
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I, am always interested in this thread.......hearing who and what others have used....Liz
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Just saw the messages from my local girls! A get together would be fun, but I'd better finish rads first as it's eating up what little spare time I have, LOL.
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I had everything done at Jefferson in Philly
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so happy i found this thread! i live in bucks county, pa right over the trenton briday but i grew up in mercer county. i work also in princeton at the university. i was diagnosed with idc two weeks ago. so far i have seen dr. krisher (she did my biopsy) at dr. dupree's office and had a second consult at sloan in basking ridge. tomorrow i go to dr. sataloff and then hopefully i will be moving forward with my decision and surgery. it's great to hear about everyone's experiences with local docs and i agree that we are so lucky to have access to such amazing docs!
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Hi jsrose... I work in Princeton also... Sorry for you recent diagnosis... but you statistics sound good.
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Maybe those of us in the greater Princeton area can do an afterwork coffee sometime.
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jsrose- I too am very sorry you had to join this group, but welcome. I have heard lots of wonderful things about Dr Sataloff. I have a good friend who is under her care and loves her. She didn't take my insurance, or I myself would have used her. I have a very good friend who works in ongology at HUP, and she speaks very highly of Dr. Sataloff. I believe she is affiliated with Pennsylvania Hospital in Center City. Good luck and try to stay in touch. This group saved my sanity when I was originally diagnosed.
Sue
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Hi JSRose - I go to MSK in Basking Ridge and they are wonderful! I'm also in the Princeton area and would love a get together.
Question - has anyone done lymphatic massage? I have some fluid sitting around in my surgical sight and over the holidays had another drain tube put in after having a large seroma drained. My surgeon at MSK in NY said it couldn't hurt but his nurse said to use a reputable one not just a place that has it listed on their website that they do it. I figure we are close to Princeton Med Ctr and thought some of you could recommend a place or someone there.
Thanks ladies and enjoy the snow!
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Karen, you will get lots of good information on the Lymphedema forum. Do a search on lymphatic massage in that forum, or just start a new topic and post your question.
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I live in central NJ but use the LE therapist at hackensack where I did my treatment
definitely join the LE threads, lots of folks very knowledgeable and will give some advise.
I know that Centra States hospital in Freehold has a good LE center and a pal of mine was impressed with them
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Jsrose - I saw Dr Sataloff many years ago when my sister was diagnosed with bc. My ob/gyn wanted me followed by the 'best' due the family history and dense breast tissue and recommended Dr Sataloff. I saw her for a couple years. Unfortunately, I did not maintain this connection and even skipped a few mammograms. Last year I finally had an overdue mammo and found I was in trouble. I went with a different surgeon (Dr Czerniecki at HUP) because I was a little embarrassed to go back to Dr Sataloff since I had really dropped the ball for a few years and did not schedule my mris and mammos as she suggested. Anyway, she has a wonderful reputation in Philly. She is associated with Pennsylvania Hospital (a part of UPHS) and was recently promoted to chair of Surgery at Pennsylvania Hospital. She is a very dedicated breast surgeon.
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wow, thanks for the responses. i hope tomorrow will go well. i'm a bit overwhelmed by the decision and am honestly not sure what to do. hopefully after i see dr. sataloff tomorrow i will feel more certain. right now i have a surgery scheduled with sloan next week for a lumpectomy but i'm just not sure if it's the right decision. i want to do lumpectomy first and see what my final pathology is and then move forward with the next step. right now i am leaning toward bilat mx with immediate reconstruction but frankly i am just not sure. i really don't want to go thru the radiation and with the issue of being extremely dense, i just don't know if i want to sign up for the anxiety of wondering if there is anything being missed as well as the stress of being monitored every 6 months. i just turned 40 this year and have young kids and work. it seems like there wouldn't even be time to get all this screening done all the time!
i also found out this week that i am not a candidate for the flap procedures and i can't help but worry what would i do if i needed to have mx and then i have gone thru radiation and my only option is implants which i've been told have a good chance of failing ater radiation? so much to figure out it is overwhelming!
has anyone else done lumpectomy first and then went ahead with bilateral mx a few weeks after lx? if so, i would love to hear how the chain of events went and overall experience.
sorry i am all over the place but today was a bit of a panic day!
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jrose: two things. First I went to an excellent lymphatic massage - physical therapist in Bucks County New Jersey. Will try to look up her name, but the place was great.
I had a lumpectomy and then a full bmx a month or so later, but I had DCIS which was in an area about 7 cm by 5 cm, with LCIS and other abnormal cells in the "clear" margin. After my lumpectomy, my first BS told me that I had clear margins and that I just needed radiation. I do not do well with anxiety, and I really didn't want tamoxifen or radiation. I took the pathology report and went for second and third opinions. Two doctors recommended at least an mx, one based on the size of the DCIS, the other on the present of LCIS in the margin. I'd had four or five biopsies on the non-cancer side, and decided that if I was doing this, both were going. I had a BMX with no reconstruction. I wanted a faster recovery, and did not want the risk of multiple additional surgeries nor the pain that I've heard associated with recon. It will be two years in April. I don't regret either decision. I have peace of mind about the cancer, and I am happily flat and fabulous. There's other threads that discuss not having reconstruction. While everyone has to choose for herself and I do not wish to disparage in any way anyone who chooses recon, I do think that the possibility of no recon should be at least looked at. At least take a look before you decide.
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jsrose... I had lumpectomy and then chemo... radiation was next. I agree with you about not wanting radiation and also didn't want to worry for the rest of my life, and didn't want implants. So I then opted for bilateral MX and DIEP/GAP flap. I consulted with local doctors, but chose to travel to New Orleans for the surgery - the docs in NOLA have a hospital just for reconstruction and flap surgeries. I would be happy to talk with you if you'd like... just PM me. Have a look at the NOLA in September thread for my info... I am curious why you have been told you are not a candidate. I have heard many times that doctors who don't feel confident in DIEP flap will tell their patients this, but in the right hands it isn't true. I know many women, including myself, who were told they were not candidates by a local doctor, but they were candidates in NOLA.
Also, go to the picture forum to see results. PM nowheregirl for access.
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bdavis- thanks for the info. i will consider it. we had a big bump in the road today. my brca test came back positive for the brca2 strain which is very surprising given that my mother tested negative and i dont have any closer relatives on either side who have died of breast of ovarian cancer (that we know of). At this point I am going to go with double mx with reconstruction and most likely will use dr. sataloff at penn. i am overwhelmed by the stress of now worrying about my risk of ovarian cancer but with the current tumor, i cannot do much about it right now, other than to begin making phone calls to set up appointments with gynecological oncologists. anyone have referrals for gyn onc.? or have gone thru something similar.
i feel like a ticking time bomb and who knows what is brewing inside me. i have a bone scan scheduled for next week and then hopefully move forward with planning the mx and recon and then move forward. i know i need to take it one day at a time but it's hard. three weeks ago i thought i would like till i was 95 as three of my grandparents did and now i not only have bc but i now have a brca positive test that also puts me at high risk for ovarian cancer?!? even the thought of finding a separate online support group for ovarian cancer is stressful!!!
anyone who has gone thru something similar or knows someone for referrals would be so appreciated. i was highly disappointed in mskk. i haven't been able to talk to my bs there and she basically just wants me to play telephone with her nurse about my decisions and questions. am i really going to show up to surgery without now telling her that my brca test came back positive or understand what she will do in surgery?!? i know they are supposed to be the best but i need to be treated like a human and not a statistic. the bs at mskk laughed at me last week and said there was "no chance" my brca would be positive given my family history---i hate that all they focus on is the numbers and dont think i can get past this just because they are the "experts".
i like dr. sataloff very much but more than that the whole environment felt warm, empathetic and helpful. they set up all my appt with ps consults with me and made me feel like a person.
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Jsrose - I remember feeling much like you describe. It is very overwhelming! There is so much to learn and decide! It does get better, though. I find it hard to imagine that this time last year I was in the midst of chemo and pretty upset. Now, I'm ready to move past this disease and get on with my life.
Strange about the genetic testing! I did not test positive for the BRCA mutation, yet both my mom and sister were diagnosed with bc in their early 50s. The geneticist thinks we might have one of the lesser known mutations and I've agreed to be tested for Cowden's Syndrome. I've already seen a dermatologist who specializes in Cowden's and I'll meet with the geneticist in March to have blood drawn for the test. This is one of the nice things about being treated in a university setting - there are specialists for everything, all under one roof. I like this team approach!
I work for the University of Pa Health System and have had a number of medical procedures performed at the various satellite locations, as well as at the main hospital. I've been treated very well at each. Will Dr Sataloff operate at Pennsylvania Hospital or HUP? I'm most familiar with HUP and I would be happy to tell you about my experience there. In fact, I had phase 2 of my DEIP reconstruction this morning at the surgicenter in the Perelman Building at HUP. My PS, Dr Steve Kovach, is wonderful and Dr Serletti (cheif of plastic surgery department) has a great reputation. Again, I'm more than happy to share any info about my experiences.
Take a deep yoga breath, you will get through this in time.
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jsrose,
I am being treated at mskcc as well. It is disturbing to hear you are not happy with your BS. It just makes me feel like if I can't be happy with my treatment at Sloan, then where else can I go? I have a consult on Tuesday, which I hope goes well. Will you try to seek another BS at Sloan?
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Jsrose, I know the feeling too. It is very overwhelming. But at least you know about it and are taking care of it. I had all my tx at Penn, and they made me feel confident and comfortable. My BS was Dr. Tchou and PS was Dr. Wu. They're both excellent. I just asked my onc's NP which PS she would use since she sees the results. She said Dr. Wu does beautiful work. She is a young, up and coming surgeon. I loved her. The most important thing is you are comfortable with your plan and your team.
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Waiting- I think it's a very personal decision and I saw a bs at basking ridge. I have yet to be able to speak with her on the phone even after asking to and she basically told me that it was a joke that I even did the brca testing with no family history but also that it didn't even matter what the results were in terms of my decision?!? I personally feel that I need access to at least talk to my surgeon as well as I don't feel there is much support at the office to get you connected with ps and others if necessary. The other two consults I had were all willing to call ps office to get me in ASAP as well as give me referrals to anyothers that I needed. I don't doubt for a second that msk are the" experts" but somehow for me I always fall outside if what the statistics say and I don't feel that they are willing to acknowledge that possibility. It's all a numbers game for them.
I have heard that some of the the bs in the city are great at msk. For me it's too difficult to get to and I am pretty accessible to penn so I will go there. You have I feel comfortable with whole experience. For me I am terrified and I can't also add to my stress by not being able to contact my bs and hoping that she get my messages accurately before surgery?!
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jsrose... Unfortunately, when you are in the field of gray, not black and white, you have to do what YOU feel is right. And believe me, not all doctors will climb behind you. I feel its an ego thing. Or they are all too consumed with standard of care, or perhaps its a legal thing.
When I was done with chemo and decided to have a BMX and not have radiation... oh boy. I didn't have anyone supporting that decision. Of course, they said it was my choice, but thought it was too drastic and not medically necessary. But when you are in our shoes, medically necessary and mentally necessary don't always jive. So I did what was right for ME, and had the BMX. My local Medical Oncologist, who came from MSK and left because they are too in the box, consented in the end, but was not on board. But now, he says how great I look... My local Internist was really not for or against, but didn't quite know what to do with me... My local BS was ok with the MX, but she's a surgeon. Most had issues with the BMX, and all had problems with me leaving town for it. In the end, I still feel I was right. And after all, its me who has to live with me for the next 50 years.
So you wanting a genetic test, that is YOUR call... you possibly wanting a MX, again your call. No one should make you feel poorly for making decisions that are right for you medically or mentally.
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bdavis- thanks and i intellectually agree completely. it's just so overwhelming right now and this brca positive thing has really put another huge bump in the road. 4 weeks ago i was going to get an ultrasound to "put my mind at ease" that it was nothing and now i not only have bc but i am brca 2 pos and i am at risk for ov. cancer !?!. i am moving forward with penn as i feel i have to just get on with it and tomorrow i will push to get a pelvic us and then go from there.
taking it one day at a time is not easy but it really helps to have others out there to bounce things off of.
thanks.
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She's not my onc, but there is an onc at Penn who specializes in women who have the BRCA gene, Dr. Susan Domchek. I know a few women who tested positive and then switched to her. I have no first hand experience, but have heard good things. Good luck with everything. And I completely agree with bdavis. Do what's best for you.
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jsrose... I totally understand. I have met many women on my journey who tested positive for the gene and had a BMX and oofrectomy. I know a woman who lives in CA who would gladly talk with you if you want. She didn't have cancer, but had the gene... But I also have a neighbor who had cancer twice before getting the gene test, and tested positive, so she also had a BMX and hysterectomy. You are not alone. And I know what kind of whirlwind you are going through. Just know you do have time to make the decisions you need to make... That was the one thing I learned through all of this. Take the time for proper testing before jumping into surgery.
If it were me, knowing you are BRCA positive, you have a 50-80% chance of recurrance or new primary. I would have a BMX and oofrectomy (not at the same time.) And if that means delaying surgery a week to set up reconstruction I would wait. Nothing is going to change in your body between this week and next. That's my 2 cents.
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jsrose - I met with the Doctor Kay_G mentioned - Dr Susan Domchek at Penn. My MO thought it would be wise since both my sister and mom had BC. I was tested and found not to have the BRCA gene mutation. However, because of the strong history I'll be tested for other mutations. I'll be seeing Dr Domchek again in March for that testing. She is very active in the research world. As a physician, she is very warm and thorough. I would highly recommend her.
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Hi NJ folks. I am recently diagnosed, in Essex County. I think I will be having surgery at Sloan - has anyone used Dr. Van Zee? I still do not know what type of surgery as I am waiting for another biopsy of two more spots they saw on MRI and for BRACA. If both come back ok, will have the lumpectomy, but if not, may opt for double MX - problem is that I know that Sloan does not like DIEP flap and am not sure I want to go through two surgeries. Has anyone treated at Sloan and delayed reconstruction because they wanted to do the DIEP somewhere else? I am so confused right now!!
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People have delayed recon but the aesthetic result will not be as good, because if delayed, they need to use abdominal skin. If its immediate recon, you can have skin sparing. Or you could have BMX and then just implants placed, no tissue expander, to hold the spot for a later DIEP flap...
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hi ladies I'm new to this thread... not to this journey. I'm already on tamoxifen and done with chemo and recon. I was tasted out of Morristown NJ. every Dr I had was a woman (important to me) and they were amazing! I accidents had someobe to talk to, my drs actually gave me their cell phone numbers.
I choose to go for a unilateral (right side) mastectomy instead of trying a lumpectomy. if I had a lump I would still need recon as I was small chested AND I KNEW TWO WOMEN FOR WHOM A LUMP REQUIRED TWO SURGERIES AND THEN A MASTECTOMY ANYWAY. the choice I made allowed for a skin and nipple sparing MX with immediate TE placement. That option would have been of the table after an attempt at a lump, if unsuccessful.
I did have brca testing, all negative. I chose chemo; I was a Oncotype of 21. I still question that decision now that my body is so damaged from it. My skin has no elasticity anymore, my muscles are weak, my body has gained weight that I am struggling to lose. Counting calories and exercise doing seem to be moving the damn scale... I turn 45 next week and I feel like I've aged 20 years of late.
Anyway, after chemo I had my exchange, and had my left breast augmented to be as big as my right... I went up a size. I had no complained during any of my surgeries and from diagnosis to exchange was 6 months. I was lucky, I know for many active treatments take years.
Like i said earlier, I'm on tamoxifen and thanks to finding Gabepentin, I have no hot flashes anymore.
So thats my story. I will just say if anyone is questioning the quality of communication coming from your medical team... DEMAND THEIR TIME. If that means just showing up at their office, then so be it. I did that a few times, and they always made time for me. Screw protocol... This is my life....I have cancer not a stubbed toe.0 -
wow June I agree...love that you just say it, that is how I am..
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Juneaubugg, I hear you. I was always "young" for my age and am now looking substantially older and my process was easier than many others: 9 months total form first mammo to the end fo radiation. for me with alrger breasts the lumpectomy turned out well but lymphedema is possible even with only a snb and lumpectomy. Thanks radiation, not!
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Hey Juneaubug - I was also treated in Morristown - at the Carol G. Simon Cancer Center. Who were your docs? I used Dr. Gendler and Dr. Starker. I had chemo locally though - not through Morristown.
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