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Topic: Connections in Greater Philadelphia area, DE, NJ

Forum: Member Matchup & Virtual Support Meetups —
A place for members, in similar geographic areas, to connect for support, local resources and referrals as well a place to meet up within the community virtually.

Posted on: Aug 8, 2018 04:05PM

msarcich wrote:

Are you a breast cancer patient, Survivor, or know of one, and live in the Greater Philadelphia area including Delaware and Southern and Central Jersey? If so and you would like to connect with locals who know exactly what you are going through, consider joining our group. It's called In This Together Philly Wilmington.

We share resources. We share support. And we have regular get-togethers so we can share smiles and hugs face to face. We have members from Doylestown to Middletown Delaware. from Princeton New Jersey to Kennett Square Pennsylvania. And all areas in between those.

Some of us will be going to an event in West Chester this Sunday. It is sponsored by Cuddle My Kids, which is a fabulous local organization that supports families going through cancer. If you can make time for this event, which is free, it'll be so much fun. It's at a waterpark at the West Chester area YMCA

share this group with anyone you think needs this type of support. New members are always welcome. Hope to see you Sunday

https://www.facebook.com/groups/2006782929610286/

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Nov 3, 2018 06:53AM S3K5 wrote:

I live in Central Jersey and have connected with others in this area on another forum called "New Jersey/NYC/CT/Eastern Pennsylvania ladies" under "Managing Side Effects of Breast Cancer and Its Treatment".

I don't know if many are aware of this group, which explains why this hasn't received any comments/participation.

Hopefully people will chime in and introduce themselves!

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Chemotherapy Gemzar (gemcitabine)
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Nov 3, 2018 08:02AM msarcich wrote:

Hey hey there and thanks for letting me know. I even forgot I posted this. :-) I would love to make sure more people know about the group. it's been so healing for me. And I want to share it with others so they can experience that too.

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Nov 3, 2018 08:04AM msarcich wrote:

And where in Central Jersey are you? We do have a few members in Princeton. And you're welcome to join us as well if you feel like you need another group.

would you mind staying connected with me? I could use some help gathering resources and services in Jersey. I would love your support on this. You can find me on Facebook.


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Nov 3, 2018 11:58AM S3K5 wrote:

Hi msarcich, thanks for your response. I live about 30 miles north of Princeton. I will keep in touch via private message or email.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Chemotherapy Gemzar (gemcitabine)
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Dec 13, 2018 12:03PM Barbg1202 wrote:

Hi All,

I work in Philly but currently live in Blackwood. I am on a few sites, trying to get info, feedback etc from women who have or had this awful disease.

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Dec 13, 2018 12:20PM msarcich wrote:

Join our group and ask your questions. We have many n living or working or being treated in Philly. We may be able to help you get the information you seek. For sure we can offer you much emotional support.

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Jan 24, 2019 08:30AM msarcich wrote:

Hello everyone,

May I ask for your help? I need to find a part time job. And I'm starting from scratch on this after having been out of the workforce for more than ten years. Would love your insights on where to look and how to find solid job leads.

i'm in wilmington, delaware, but very close to pa, like aston or glen mills. my career was in communications. my strengths are business writing of all kinds, project management, and event planning. but i'm super flexible on what type of job i take.

honestly, what i would love is a job that supports the breast cancer community. i'm very focused on giving back. i started my local peer support group a year ago and that's become my passion. i would love a job that would let me continue to focus on helping my group. and even better if the job teaches me things that allows me to help my group better.

also, if you are looking for in-person peer support, consider joining my group. we have members form allentwon to dover. princeton to kennett square and all of the places in between. and while we have online support, we get together frequently. nothing like spending time with people who truly get it. :) our last get together was last weekend in willow grove. our next one will be in february at sephora in king of prussia. here is the link to the group on facebook.

https://www.facebook.com/groups/2006782929610286/

and thanks for any help with job leads and tips.


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Mar 12, 2019 12:26PM MaudeB wrote:

Struggling over removing implants for DIEP or APEX. I'm looking for a great DIEP doctor in the Phila. area. I am 63, 3 years out from my bi lat mastectomy. and 2 years out with my under muscle silicone implants. I had 33 rounds of radiation pre mastectomy and expanders then implants.

I've been waiting for the pain and tightness and discomfort to ease, and it isn't going away at all. I feel like I have a tee shirt on that is 5 sizes too small. I dislike the cold feeling very much. I have severe muscle animation on the non radiated side, and moderate animation on the radiation/lumpectomy side. I do NOT have zaps and zings - more constant soreness and tightness and animation. I do have full range of motion, and they actually look pretty good. I have seen several doctors in the Phila. area to get advice and they all seem to conflict NOT for medical reasons, but more like they want to do the procedure they prefer to do. One said do a Lat. Flap, another said I had post mastectomy pain syndrome and that nothing would help (I don't have the symptoms associated with that per se) my original PS said remove the implants and put them on top of the muscle and use alloderm, another doc said he'd do a diep and then on impulse suggested we try moving the implants to above the muscle first and see how that went. My breast surgeon said they looked pretty good. I agree - they look great but they bother me all day every day.

I have reached out to the folks at NOLA and they have reviewed all my photos and my case history. They say that I am a perfect candidate for an APEX procedure, that I would have the comfort of my own tissue and the size, projection, shape that I want. I spent a great deal of time on the phone with their patient educators (and they are PATIENT) :) They can schedule me in June. My husband can go with me.

SO my final questions are - my insurance covers NOLA as an out of network provider and the costs are extremely high. I feel their care and doctors are excellent - and with the pre op checks and exams I feel they would help identify any reasons I should't go forward with a diep or apex. But I wonder if I could find this surgery in the Phila area? Can anyone recommend someone who is very experienced with this surgery? I don't want to call out the doctors who I've already seen and found not helpful.... I want a doctor who listens to me and sees me as someone worth helping. Sometimes I feel that because I am 63 and my implants look "OK" that I'm not seen as someone who should have any complaints. It seems a shame that I would have to go all the way to NOLA and pay all that money rather than something closer to home and in my BC/BS network. Can anyone help advise me? THANKS!!!

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Mar 12, 2019 01:10PM msarcich wrote:

Hi there. I wish I had some answers for you. I'm not familiar with the apex procedure. My implants were done by Liza Wu at Penn and she did amazing job.

You would think you'd be able to find the right surgeon in Philly or even NYC. Where is NOLA?

If you don't get any input here, consider joining the peer support Facebook group I started and asking the same exact question. We are locals who have dealt with breast cancer. We live everywhere from Allentown to Dover Delaware. From Princeton chick has a square and all the locations in between. And we have had every diagnosis among us and all types of surgeries and treatments.

Here is the link to the group.

https://www.facebook.com/groups/2006782929610286/

I'm easy to find on Facebook. You're welcome to reach out to me there. I hope that you find the answers you're looking for. And if I can help you find them I will



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Mar 12, 2019 01:13PM msarcich wrote:

II forgot to mention that my peer support group does get-togethers all the time. We just did bumper cars on ice with our families in Delaware this past weekend.

this Sunday we're having lunch in Phoenixville. And at the end of March we will be at the Princeton YMCA with a very special Fitness sampler workshop May just for our group by the Livestrong trainers there.

Would love to meet you all. Please join us for any of our events.



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Jan 28, 2020 05:04AM - edited Jan 28, 2020 05:05AM by JRNJ

msarcich I know it's been a while. I'm in central jersey and making same decision. Had consults with 2 drs that do diep and lat flap. Who did you go with?

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal Surgery 1/29/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/10/2021 Femara (letrozole)
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Jan 28, 2020 06:33AM msarcich wrote:

Hey hey there it has been a while but I am happy to answer any questions for you. So I ended up canceling my surgery for this past year because I had so many family crisis going on not related to breast cancer. I could not deal with going through a surgical recovery. I lost my mother and my mother-in-law last year.

That said, I do have my surgeon lined up. Dr Liza wu at Penn medicine. She did my implants. She did an outstanding job with the implants. And I know of people who have had the micro surgery flap with her and had excellent outcomes.

do you know that I founded a peer support group for patients and survivors in eastern Pennsylvania New Jersey and Delaware? It's called in this together Philly Wilmington. It's on Facebook. And the whole point of the group is getting together with people who get it. there's nothing like spending time with someone who understands what you have been through.

We are now more than 600. And we have a lot of people who have gone through different flap surgeries. If you join us you're welcome to post any questions there. And of course I would love to meet you. We have a writing to heal workshop coming up at the breast cancer resource center in Princeton. I believe that's the first week in March it is scheduled for. And we're trying to also do the same workshop at the South New Jersey Gilda's club. I think we have a day but I'm blanking on it right now.

plus we have a ton of other events coming up. And if it isn't an event that you're interested in or that you can get to, every member of the group is welcome to make their own event. A simple as come have coffee at my house or at a local diner. Come go for a walk with me. Whatever it is that rocks your boat.





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Jul 4, 2020 10:18AM - edited Jul 4, 2020 10:19AM by Mavericksmom

Hi! I am in Bucks County PA. I wish I had been active on this site earlier. I had a mastectomy with DIEP reconstruction in early 2019 by Dr. Sameer Patel (PS) at Fox Chase Cancer Center in Philadelphia. He is pretty amazing, did a great job and my surgery was not easy to do. I had previous abdominal surgeries and radiation to the breast in 2003 which caused severe burns/blisters etc. Healing from the reconstruction took a lot longer due to the radiation burns in 2003, which I had at a local hospital.

There are plusses and minuses about Fox Chase Cancer Center, as with any facility. I am willing to share more information if anyone is looking into that hospital for treatment or consultation. The plusses far outweigh the negatives and I continue to go there for follow up care.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 4, 2020 02:09PM flashlight wrote:

Hi, I live on the border of Newark De and Landenberg, PA. I don't have facebook. I just changed from Christiana hospital to Penn Medicine in Kennett Square, PA. What a difference!

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Jul 4, 2020 02:34PM msarcich wrote:

Hey Hey there I'm in North Wilmington so I'm not too far from you. And I am treated at Penn medicine. I use their Philadelphia location and their valley forge location. And in fact I'm going into hup This Tuesday for pap flap reconstruction on my right breast.

I know you said you're not on Facebook. But stay in touch with me. I run a peer support group for breast cancer patients and survivors on Facebook. All ages all stages all subtypes. And I've been doing this for a well over 2 years. As a result I am very connected with the local and national breast cancer community including organizations and services that can support you. And we have a number of people in the group in the Newark area and also in Avon Grove and I can't even remember all the other small towns Oxford I think. And that's all near you. If you want local connections I can help connect you. You can reach me here or you can text me at 302-345-4265.


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Jul 4, 2020 02:35PM msarcich wrote:

Hey Hey I love that you posted this. It's such a huge help for others who are considering what you've already been through.

If you're on Facebook consider joining the peer support group that I run. We have more than 700 members in eastern Pennsylvania New Jersey and Delaware and quite a few near you and Bucks County.


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Jul 5, 2020 05:25AM - edited Jul 5, 2020 05:29AM by Mavericksmom

Msarcich and Flashlight, my sister used Penn Medicine in Lancaster County. She was also very satisfied with the care she was given. I think we are especially lucky that in the Philadelphia area we have so many great hospitals that do a great job treating breast cancer. Penn was actually one of my choices, I went with Fox Chase because I had genetic testing there in 2004 and the location is easy for me to access via back roads. I avoid all the city traffic.

I don't have Facebook. I had it once but it ended up raising my blood pressure and took forever to even find pictures of my family and friends posted. Perhaps my timing was bad because I joined in 2016 and also unsubscribed the same year!

Wishing you the best for your surgery, Msarcich!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)

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