New Jersey/NYC/CT/Eastern Pennsylvania ladies
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Hi tcapemay! - Howdy neighbor! I'm two+ years out and doing fine! All of my drs are from HUP (BS - Czerniecki, RO - Freedman, MO - Goginini). I'm an employee of the health system, so as long as I stay in the system, my care is covered by my insurance. My surgery and tx has been virtually free. I'm on Arimidex (5yrs) which is a bit challenging, with all of the aches and pains that go along with it. Taxol was rough for me as well. I feel like the neuropathy (toes) is slowly going away, but its hard to tell since I also have achy feet from the Arimidex. I'm getting back to some form of normal I guess. Should be going to the Healthplex, which I joined in August. I have been avoiding it though with this weather. I'm too tired when I get home from work and too busy on weekends. I know, I know - excuses excuses! Soon I keep telling myself. Maybe this weekend!
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Hello,
Just joining now. I live in Philly suburbs. I go to Aria Health Torresdale (used to be called Frankford Hospital). I am very happy with all of my doctors - Breast Surgeon Dr. Sun Yong Lee, Plastic Surgeon Dr. George Zavitsanos, Med Onc Dr. Julia Kennedy.
Good luck to all searching for good doctors. I feel very lucky to have found mine.
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Welcome Birdlover - I am a Philly Burb gal at heart.
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Hi Ladies - Can anyone recommend a good counselor who specializes in cancer; preferably breast cancer? The social worker at my cancer center is useless. She is the social worker at a cancer center. It's all she does and yet she cannot give me a referral because she claims that there are no medical oncology counselors. She suggested a counselor who specializes in "women's issues" and told me she does great work with domestic violence. Domestic violence? Does that have anything to do with breast cancer? Unbelievable!
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BTW - I just found a referral service for psychologists, counselors and clinical social workers who specialize in cancer. They can be contacted via email at info@apos-society.org; or Toll Free 1-866-276-7443
(1-866-APOS-4-HELP) - American Psychosocial Oncology Society
The following information is requested:
- caller's name (spelling of the last name)
- contact phone number(s), including area code
- patient’s city/town and state of residence
- zip code of the location where you are searching for a referral
Calls are accepted 24 hours a day through a voicemail system and then handled by trained staff members who have access to a national directory of community mental health resources. Helpline inquiries will normally be returned within 24 to 48 hours.
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WW - Did you ask at HUP for a referral? My MO gave me 2 names at HUP who work with cancer patients and their families. I never got around to following up, so I don't know how good they are. However, I do know that there are counselors out there who are trained to work with cancer patients. My GP also had a name for me to contact. She sounded perfect, but she didn't take my insurance. I did work with a local psychologist who specializes in PTSD. She was helpful. She helped puts things in perspective for me. It was a short relationship.
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I would try calling Support Connection-thy're amazing! They have an 800 number but I don't know what it is. They're based in Yorktown Heights but help breast and ovarian cancer patients all over the US
Good luck!
Babs0 -
Warrior Woman is there a Gilda's club near you? A new one just opened in Newark.I go to the one in Hackensack. Gilda's has good support groups and some other stuff,like yoga classes, all are free. There is also cancercare.org which has counselling by phone or I believe in person.
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I wanted to chime in on the reconstruction type, as most people on here have gotten implants. I initially had a lumpectomy, but for many reasons I decided to have a BMX, and had a lot of time during chemo to decide what path to take. In the end, I decided to go with the DIEP flap because I had read and spoken with too many women who were dissatisfied with their implants, and wasn't all that impressed with the local PS brag book of pictures (well regarded PS in Princeton). For me having a DIEP flap meant more natural look and feel, no replacements every few years (as you get with implants) and no muscle taken (as you get with TRAM and lat flaps). My dilemna was not enough belly fat for two full C cups. So my PS did a GAP flap (buttocks). Everything was fine, I was driving at two weeks post op. No pain. All was great, but then my right incision opened and one thing led to another and I had to go back to get a stacked DIEP to replace the right side. Again, the recovery was not bad. I was driving at about 2.5 weeks post op. And going to my weekend long HS reunion 4 weeks post op. People seems to think DIEP is way more of a recovery than other surgeries, and it may be a week longer, but in the end, once you're done, you're done. Also, with TE, you need to go back to get fills and then the exchange, so I am not sure there is a huge difference. With the flap procedures though, you NEED to go to someone with tons of experience. I was 48 when I went through my stage I surgeries, and I highly recommend it for anyone young and wanting a great aesthetic result. My scars are practically invisable, and in a bikini, you can't see any of them anyway. I go for my tattoos in April... Yahoo!
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Janetanned - I assumed HUP has people and planned for them as a back-up. The 5 hour round trip commute is something I'm trying to avoid. They offer a lot of good stuff and if I were closer I'd take advantage of much more.
Babs & NYCChutzpah - Thank you for the suggestions. I've made a note of them.
BCO is fantastic. A few minutes after I posted my request here I received a message with a referral to someone who specializes in BC in the Princeton area. I am going to contact her tomorrow. She is close to me and only does BC. Interestingly, I spoke with someone in LA who said that there are no therapists for BC in her area and so she is opening a private practice to specialize.
Thank you to everyone for the suggestions. Should my call tomorrow not pan out I will use the information you've provided.
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WarriorWoman - I'm glad you got a referral. I just saw your post now. If you want another option, let me know. I've been seeing someone around here as well and I think it's going well. I was referred by someone else on BCO. Good luck.
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Thanks Rachel! I messaged you.
Hang on everybody. We've got an amazing snow storm. Hunterdon County is calling for 18". Unfortunately, because of my BMX I cannot help shovel. Really wish I could.
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BUMP!!! I see we have new People....Liz
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Hi
I had my b/l mastectomy in Jan. 2014.
I'm starting chemo next week.
TCH
When does the hair start falling out? Still need a wig. Great resources posted. Thanks
Are there any concerns with Portacaths who places it etc. Rad vs Surg. ?
I'm trying to figure out where I want the treatment. MSK, Fox Chase or Cancer of America.
Also I've been reading to much. Stupid question has anyone heard of MSO and DMSO?
Sorry so random.
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One more after thought how can I feel confident I'm receiving the right cocktail of chemo. Totally stressed.
Probably because I only had a 4% chance of Recurrence and it happened yuk. I'm trying to have faith/ hope etc.
Focusing on the positive.
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Funthing - A ranking of the breast cancer treatment centers in the country placed MSK at # 3. I'm going to Penn and it ranks # 9. Fox Chase was not at the top of the list for centers in the country. The facilities were evaluated on many different criteria. The one that was most important to me was outcome effectiveness. MSK has extremely high ratings for effective treatment of breast cancer. At the same time, my medical friends advised me at the time of diagnosis that the surgeon I chose is the most important decision I will make. I was told that chemo is fairly standard and to go where ever is convenient. I am going locally for chemo as it requires trips for all sorts of things between the infusions.
Hair loss depends on the individual and the chemo regime. I read for some it starts day 10, others day 14, 17, or 21 and for some it may be minimal. I am using the cold caps to reduce hair loss with my TC infusions. I am on day 34 and while my hair has thinned I still have full coverage. It's expensive and labor intensive but and option for those want to do it.
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Funthing - I agree with Warrior Woman. MSK is very high ranking and now fairly local. Fox Chase has a good local reputation, but when given choices with national recognition, I think I would head in that direction. I know one person who chose Fox Chase because it catered to cancer patients. She was intimidated by Penn and Jeff. Cancer Treatment Centers seem to be boutique centers. My husband did some work there right before my dx and reported that the facilities are like a 5 star hotel. They have a lot to offer in comfort and services, but I'm not so sure how good they are. Even after he saw the center he did not recommend we go there for tx.
Maybe you could tour the chemo suite ay MSK. Talk to the nurses and maybe some patients. It is fairly new, make sure it has a full and experienced staff. I felt very comfortable at Penn. My MO was right next door and readily available if needed. I had a reaction to taxol and the PA and MO were by my side within minutes to assess the situation and monitor my condition. I was able to continue with the infusion with close monitoring.
Maybe not so important medically, I would also recommend checking out the comfort facilities. How crowded is the infusion suite? Is there any privacy? How closely monitored is each patient. Are the bathrooms adequate and clean? Is there a café or food court nearby? You will be there for a few hours, you and your helper might want coffee or refreshments while there. Penn has small private rooms for each patient with close access to a bathroom(a few steps away), ice machine and lounge with internet access. I could wheel my IV pool right into the restroom or walk around the suite if feeling cooped up. My husband met me there each time with lunch and work to do. He could go to the lounge to check emails and stretch a bit. I enjoyed the privacy of my own room. I napped or relaxed through each tx.
As Warrior pointed out, you should factor in convenience. You might have to go to your facility in between tx for blood tests or other things like a Neulasta shot.
As for the port - I had to have one, given my veins and my cocktail AC/T. Radiology placed it and I had no problem with it. Besides being a little weird, it was so easy to get chemo. It also came in handy for IV access when I was hospitalized overnight for a fever. I used it for my first Reclast infusion once I was done chemo. My MO said it could be removed after chemo. Installation and removal were day procedures. The site was sore for about a week after it was installed. It was accessed a few days after it was placed with no trouble. I needed only a local anesthesia for the removal. It was quick and painless.
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Funthing - Good luck on your decision. Convenience is important, but your comfort level with your doctor(s) I think is really the most important. I tend to take 'rankings' with a grain of salt - it's not uncommon for health centers to get high ratings because they are so selective in who they will treat (I've read some stories about that with cardiac centers) that can take the most treatable cases. But it obviously is important if they do have amenities and are a comfortable, caring place for patients. While I liked my doctors at Jeff, I didn't think they had as good a nurse navigator/patient advocate system as I had seen at Fox Chase and Princeton. That left me feeling a little lost at times.
As for the hair, that usually starts about 2 weeks after your first treatment. You'll feel some tingling in your scalp, and you'll notice hairs coming out more frequently when you brush, etc. Depending on when and if you shave your head, you might want to wear a cap at night (they have some nice ones, or just the net ones you can get at a drugstore) to keep it off your pillow. I ended up not shaving my head - I just got a really short pixie cut. I probably should have gotten it shaved, because I wound up with about 30 - 40 hairs that stuck around, which looked really weird. But I don't think I would have wanted to have gone out bald in public anyway. I stuck with my (super) wig and hats.
I was very happy to have a port because it spares the veins. But mine really hurt for over a week after I had it in. Just a heads up that you should be ready to take pain killers a few hours after the insertion. I felt I was not prepared for the discomfort - and I usually have a high tolerance for pain.
Good luck with everything.
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I agree that comfort with treatment providers is a very important factor to consider. I do, however, think rankings matter. From what I've observed, the higher ranked facilities attract patients from all over the world. Nobody flies in to a cancer center with a mediocre reputation. The sickest patients do travel great distances to receive care at the top facilities. My friend was just treated at MD Anderson which is #1 for breast cancer. She and her family literally lived there for several months. When your life is on the line you do what you must to try to survive. I've found Penn to be rich with services and highly professional. However, I am a number. They look at my path reports and determine treatment based on research. Everyone is nice but there are no warm fuzzies going around. At my local no big name facility there is an abundance of warm fuzzies but I lack confidence in certain aspects of their services. More specifically, they blew my diagnosis a couple of times, the social worker and dietitian are useless but my MO is someone I can communicate with well who has impressed me with his knowledge. I am comfortable going locally for chemo but I am really glad I chose to go to a top ranked research hospital for surgery.
Janetaned - 6 hour commute to & from Penn yesterday with the traffic on 95 backed up to Bucks Co. This was all for a 5 minute TE fill.
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Warrior, that was well said. I chose Penn for the same reason. I didn't have such a great outcome with reconstruction though and I often wonder if it's because it's a teaching hospital. Not sure my PS actually did the work himself. But I continue to go there.
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Bluebird - Who is your PS? I have Liza Wu. I would freak out if I learned an understudy stepped into do the reconstruction surgery. As I'm in the middle of it now and scheduled for the exchange to implants in April I am hoping for reasonably satisfactory results. How is it you think your PS did not perform the surgery? That sounds unusual. May I ask what your dissatisfaction is with your reconstruction? I was highly satisfied with my BMX and TE placement. I measured my results by comparing my progress with others who had the same surgery around the same time. I was far ahead of the curve in recovery without complications and achieved full mobility in a couple weeks. Some of this may have been due to other factors but I do credit my surgeons with not having botched things up. BTW - Did you have tattoos done at Penn? I'm thinking ahead.
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I go to the same office. Serletti is my surgeon. It's a long grim tale, but I had DBMX with immediate flap reconstruction. Went back numerous times after surgery complaining that something wasn't right. (one week I went 4 times!) I never got to see Serletti, but only nurses who continually told me to stop worrying, I was fine. One MONTH after surgery I finally saw Serletti who opened my flap in his office. (brutal) and three days later removed it. Nothing quite like losing three breasts. I am still depressed about it. I keep hearing, that losing a flap a month later is unheard of, but it happened to me.
I just had an expander put in and I'm in the process of trying to decide if I want to try a flap again or get an implant. It's hard to make a decision when you've had such a bad experience.
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Bluebird - EEeeeeeee! I am sorry to hear that. I don't blame you for being upset. It's enough to go through treatment one time. Nobody wants to have complications that require so much hell.
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Bluebird - That does sound brutal! I can't imagine going through the sx to have one flap fail, especially after a month. I'm a little surprised since I understand that Dr. Serletti is highly recommended. It does make you wonder what might have happened. He was too busy when I had my BMX/DIEP. My BS's office set up the surgery appointment with the first PS who would be available when the BS (Dr. Czerniecki) was available. I wanted to move fast after dx, so I was willing to let them pick a PS for me. I think I lucked out. Dr. Kovach was very patient, kind and caring. He encouraged me to call with questions or concerns. I had some stitches open up and he saw me right away. Dr Wu also has a great reputation. I've heard many good things about her. What type of flap would you consider?
Warrior_Woman - I agree about the rankings drawing difficult cases from far and wide. I met a woman from the Bahamas who came to Penn for her radiation tx. The parking garage was always filled with out of state cars. Large teaching hospitals often lack some of the nicer comforts but they do offer the cutting edge procedures and treatments. They also offer the opportunity to participate in new and exciting studies. Before my invasive cancer was found, I was considering participating in a DCIS vaccine study. The invasive cancer made me ineligible.
I'm so sorry you have to take 95! 95 is a big negative for Penn! Fortunately for me, I can get there via back roads. While 95 would be quicker on a good day, how many 'good days' does 95 ever have?!
As for tattoos - there is a micropigmentation specialist at Penn. She is affiliated with the PS department. I think her name is Mandy Sauler. I think I'm aiming for this summer. I had my nipples done last February and I think I'm ready to finish things with tattoos.
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People on the DIEP groups all swear by NOLA or Charleston and I often wonder about going someplace else for a flap. I would only consider a hip flap. As much as I hate my thighs, I can't imagine having them cut or my butt!
My first surgery was 12 hours. I don't want to do another long surgery.
I haven't heard of Mandy Sauler. It seems that many people in this area go to Vinny Myers in Baltimore. But I can't even think about that yet! One baby step at a time.
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I've also heard good things about NOLA. They focus on one thing, so they probably get it right most of the time. It wasn't even a consideration with my original tx and sx since I wanted everything done at Penn. I'm an employee of the Health System so using Penn drs and facilities has a terrific financial benefit for me. However, if I needed something fixed I might consider NOLA, especially if my DR didn't give me a reasonable explanation for what went wrong and reasonable hope that he/she could fix it. As for tattoos, I probably would not use Vinnie again because of the financial benefit of staying within the Health System. If done by Mandy, they will be covered by insurance. Not so using Vinnie in Maryland. I've looked at her work and am satisfied that she can do a nice job. She seems well trained in cosmetic tattooing and is an artist as well.
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Very helpful conversation. It is my understanding (and I may be wrong) that NOLA is the place to go if your prior surgery got screwed up. They're experts at fixing the botched jobs of others. I selected Wu based on a recommendation of someone else who used her. I did the TEs. I just could not stand the thought of being cut anywhere else. Wu said if I used fat my boobs would be small and require implants anyway. It's the first time in my life I wasn't fat enough. I'm not sure if it was a good decision or not but it is the one I made and I'm moving forward.
Janetanned - I've been contemplating Mandy or Vinnie and will make my tattoo decision based upon who I think can do the best job. I haven't seen Mandy's photos yet. How do her 3D tattoo photos compare with Vinnie's? Did they do the origami nipples for you? How do you like them? I am really torn with this. My husband wants nipples on me but I don't want headlights. I am wondering if I can get very small nipples - a compromise. BTW - I had one good day on 95. LOL!
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Warrior Woman - I'm sorry you had a bad experience with your social worker and dietician. I am curious as to where the SW failed you because I'm a social worker in healthcare (as well as a 2x bc patient) and I've previously worked in oncology. I always want to know how to help patients better so I'd appreciate knowing what went wrong. Thanks! Joan
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Joan - Interesting. I'm an LPC and I run an undergrad program for students going into social work and counseling. As such, I hold certain expectations for service provision. The one and only social worker at the cancer center came to see me during one of my infusions. She offered her services and when I requested a referral for mental health treatment related to my BC, she responded by telling me that there isn't anyone who specializes in cancer or breast cancer. Huh? She suggested someone who works with women's issues and more specifically domestic violence. The only connection I can think of between BC and DV are the possible resulting barrier penetration issues. I responded with, "No thank you. I am not a DV victim and I will look for someone who specializes in BC as I'm certain there are practitioners who do." She seemed happy to see her job was done and informed me that I can contact her if she can be of further assistance. No business card or contact information was provided. I guess I can get that on my own too. I passed her in the hall a few days later and said hello. She did not recognize me.
Here are my concerns: First, she barged into my treatment unannounced and interrupted the discussion I was having. This is not a big deal but not the best way to offer assistance. Frankly, I was in the middle of a transfusion and not in any mood to talk to anyone. Two people were in the room with me and there was no chance for privacy. Secondly, she is the SW for a cancer center. All she does is cancer. How does she not know of mental health resources? I easily found several LCSWs, LPCs and one psychiatrist who specialize in BC in my area. It is a violation of the ethical standards to leave a client to find their own resources. She could have admitted to not knowing of any and offering to research and screen for me or with me. Additionally, if there are no MH services for cancer patients in the area, then start them. At minimum, offer a couple of groups. Get up to speed on the clinical issues and fill the gap. Connect with the behavioral health department at the adjoining hospital and get something going. Surely I am not the first woman with BC to feel traumatized. And I'm not done... When I requested MH services she should have done some basic screening to determine my current mental status and rule out suicide risk, substance abuse, etc. She didn't assess me or even find out my background. I'm sure she was happy to make a note that she "saw" me and connected me with the equally useless dietitian. I imagine she doesn't expect me to request a review of my records and I am betting that she made no note of my MH request.
So here's the deal. I'm professionally savvy and capable of making my own MH arrangements but many people are not. The average person would have been left with inappropriate services or no services. I found her to be lazy, unprofessional and I was left with the impression that she just doesn't give a s***.
Talking later with my friends I asked for their lay opinions of the social worker and dietitian. Neither works in our field and I wanted a more objective viewpoint. If you think I am critical, you should have heard what they had to say. This is a great case to present to my students with a contest of who can find the most mistakes.
Joan - Tell me what you think. Am I being unreasonable? Is my lens clouded by my current circumstances? I don't think so but I am interested in your read on this.
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Warrior Woman - my PS did the origami nipples and cleaned up some scar tissue. I also had my 'dog ears' reduced on each side of my tummy tuck scar. That required lipo and left me sore and bruised.
The nipples are great. I didn't think they would make much of a difference, but they do. My foobs look much more real than they did without nipples. Tattooing will be icing on the cake. Unlike many people on the 'nipple' thread, I came home with very little covering the new nipples. Of course there was gauze and a large plastic clear bandage holding the gauze in place. I had to keep that dry for 48 hrs. So, no shower for two days. However, after 48 hrs the gauze came off and I was able to get everything wet. I was told that I did not need to wear any sort of nipple protectors once the gauze came off. They both shrank to a nice flat slightly raised button shape. You might compare them to the button candy on paper strips we used to get as kids. They aren't really high beams since they are soft (but there). They can be seen (more of a suggestion) when I wear a t-shirt without a bra. It just the right amount of projection that allows me to forget my breasts are gone. As for the tattoos, I just want a slight hint of color. I am a redhead with redhead skin, so the color has to be slightly pink and pretty light to look natural. I wish I had taken a picture of my breasts before the BMX. I didn't think to do that since I was blown away by my dx. I want to meet with Mandy before getting the tats to see if she can match the color I want.
If you think you are going to use Vinnie, plan ahead. He is currently booking for the Fall (in Maryland). You could make your appointment months in advance.
Wow! a good day on 95! That sort of like getting up to the speed limit on the Schuylkill Expressway! Very rare!
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