New Jersey/NYC/CT/Eastern Pennsylvania ladies
Comments
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Rachel - how are you doing post exchange surgery? I am about four weeks away from mine so am starting to think about it. I know it's a relatively easy surgery but not looking forward to going under anaesthesia again. Joan
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Hi Joan - I'm doing really well. The recovery is a cinch compared with the bmx. The hardest part was reminding myself not to move my arms too much, stretch, etc, because there were no real physical limitations. A little tightness and discomfort, but no pain, and I didn't need the painkillers for too many days. I was back at work in less than a week. I'm thinking I'm a bit bigger than I had wanted to be, but I'm getting used to it. I have to admit I was a lot more groggy this time than after my bmx, but had no bad anaesthesia issues. Good luck getting ready for it.
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Joan: I always go braless.. it is such a relief in the summer. what the heck the only perk anymore is that I won't sag... the heat hurts my LE so it is better if I dont' wear a bra.....Hey go for it!
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Bump!
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njbhwgirl, My surgery went well except 3 nodes were removed for testing no results until July 10, percocets are a joke thats what i was sent home with., I have lymphadema in the right arm. ARGH!
Still searching for a onc, not really I cant stay awake long enough to go online or call anyone. smh
How is everyone doing??
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taismommy - glad your surgery went well. Take it easy and allow yourself to heal.
Gayle
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Tammy,
I like Dawn Hershman at Columbia and I'm also in the Bx. Also try folks at NYU.
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I just love,love,love my oncologist. Dr Stuart Leitner in St. Barnabas Cancer Center, Livingston NJ
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Hello/Saludos,
I am a Latina with breast cancer, born and raised in the US and fluent in Spanish. I have found this online community to be very helpful and full of resources as I navigate this unfortunate new terrain. That said I was surprised by my lack of luck in using the search feature to uncover more than 2 other Latinas. I have many identities: NY'er, educator, lawyer, feminist, formerly, "great head of hair" ; > - and, Latina, and I'd like to connect to others with these backgrounds.
In repsonse the Moderators were good enough to create this brand new forum. It is not necessarily a Spanish language forum. I am, as are most Latinas residing in the US, most comfortable in English. I was seeking a space for all Latinas, where conversations can happen in the many languages that we speak certainly but where the focus is our common culture rather than a language that some of us use.So, if you'd like to join us, Bienvenida! Come find the new Latinas/Hispanics with Breast Cancer forum. I am glad to connect. Perhaps like me you had been searching for a space to drop into occassionally where discussing issues that might arise more commonly for Latinas/Hispanics is possible without too long an explanation. I truly appreciate the community I have found on this site and want to also discuss research that specifically addresses breast cancer risks for Latinas or the importance placed on femininity in some Latin cultures, or quizas/perhaps traditional resources/remedios, or the significance of hair loss for a Latina who comes, like I do, from a hair obsessed culture. Any way, I'm sure you get it and that's the point. I'd love to spread the word that this gret new forum exists. Please spread the word to yoru friends and forums that this new space exists so that they will cosndier joining us.
Mi nombre es Vielka. I am looking forward to getting to know everyone who will join us.
Vielka / VVH
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Hi All,
I live in Paramus (Northern NJ) and am new to this site. I was diagnosed on June 14th, one day before my 50th b'day. My drs are Laura Klein, of Valley Hospital as the bs and Tzvi Small as the ps. My surgery is tentatively scheduled for either the week of July 16th or July 23rd. I am pretty nervous.
I have lots of bc in my family. (Mom had it twice, once in each breast and passed away last year from acute leukemia; her Mom had it, and my father's sister also has had it twice, once in each breast.) Although only my right breast seems to have cancer, (in 2 totally seperate areas), I am seriously contemplating a double mastectomy, so as to avoid having to go though this again. I now have to decide what type of reconstruction to get. Any suggestions appreciated!
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Hi Ladies,
I am a NYC girl and had an amazing experience at Mt Sinai's Dubin Center. Dr Elisa Port was my surgeon (chose her after many consults) and Dr Adelson is my Onc. I had radiation with Dr Greene. All of them are at the Dubin Center and it is a really amazing place. Dr Port came from MSK and dealt beaufifully with my fears, both the normal and the out of control ones! Dr Adelson is young and extremely knowledable and I LOVE her as my Onc. The Dubin center is beautiful. It's all in one place, one floor and it's quite easy for them all to communicate. I am a year out from treatment and felt like I had the best team in place to help me through and moving forward.
Consulted with Anne Moore but she doesn't take insurance, but I really liked her. She would be my 2nd choice.
It's important to get 2 or 3 opinions.
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Hi Cgesq - I'm glad you found us, but sorry you're going through what you're going through!
I had a bilateral mastectomy in January, even though my bc was only in the left breast. The reason was that I had had bc once before - 19 years ago to be precise - in the same breast and felt that two breast cancers in one lifetime was enough. Since I appear to have a tendency to develop breast cancers (although I am BRCA negative), I was afraid I'd always be looking over my shoulder (or, at my right breast, to be more precise). I have no regrets. However, your situation is different and what was right for me may not be right for you.
Best of luck in making your decision!
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Cynbest - I was treated at Mt. Sinai 19 years ago for my first breast cancer and my doctors are no longer affiliated with that institution. I am so glad to hear that you loved your team! Best of luck to you!
Joan
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cgesg - I also opted for a bmx because I was brca 2 positive. I was concerned about recurrence, and frankly, once you contemplate losing one, you start realizing it's becomes as 'easy' to consider losing them both and having the reconstruction done together (even with a mx, there's often some additional work that has to be done on the 'good' breast so they match).
I considered all the options, including a DIEP (muscle-sparing). In the end, I went with plain old tissue expanders and just got my permanent implants. The TEs were annoying, but I think I managed to avoid major discomfort (except when sleeping), and I'm adjusting to the implants. They look really good. The DIEP was so tempting, but after doing a CT scan, the PS said he would probably still need to take a tiny bit of muscle on one side, and I didn't want to take the extra recovery time or risk my strength, since I'm hoping to get back to fencing. That said, I know a lot of women, and you've probably found them here, who are very happy. Whatever option you get, I strongly encourage you to arrange to have physical therapy to help your healing process. Good luck!
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CGESQ:
Hi. I had a BMX 15 months ago, and I opted not to reconstruct. I mention this because my breast surgeon pushed recon hard. It's a very personal decision, but I just wanted to put in that it is an option - an option that a number of women take. I did it because I didn't want the additional surgeries or risk from recon. I like the way i look now, and I like being able to throw on a tank top without fussing with bras.
There's various discussion threads on this forum on opting not to reconstruct, with pictures of women who go flat, if you're interested.
We are also having a Flat Fest in NYC in the fall for women who have had either single MX or BMX but no reconstruction. www.facebook.com/FlatFest2012
Good luck with whatever you decide.
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When I did have my mastectomy, I did do recon....it did NOT work...wound up with a bad infection and emergency surgery.....I was so glad the implant was out...it felt so much better.......I will not try again.....I go breast free....there is a sight called....BREAST FREE....it is helpful......I feel happy with my choice not to try again....I really wish I did not even try.....but at the time I was so upset over the Mastectomy......Liz
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Thank you all for your advice and suggestions. I'm still not sure what to do. I am a large woman, (42DD for now) so I will probably opt for some sort of reconstruction----although a lot smaller than I currently am.
I have to look at the bmx threads to see how bad the healing will be. An then, of course, there is the chemo to look forward to.....
It is so inspiring to hear from so many women who are on the other side of the sh*tstorm that I am about to enter, and have emerged strong, cancer free, sane and healthy. I look forward to that!!! In the meanwhile, I am going to London next week to attend 2 concerts and try and put all this out of my head. My last fling for a while.
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I was also large busted........44 DD....but emotionally I just could not do a double...when you are that size it does present problems as far as looks....what I only wanted was a cleavage when I went to the PS....Dr. Christopher Godek.....so when it failed...and believe me the comfort without the implant is great.....I just had to get over it......I at times use a scarf...right NOW I just do not care and feel I am beautiful.....I did have to think....if it were a man and any part of his body was missing it would be OK!! We all know that....so I am now confident in my own skin.....when I had my Last Mamo at Ocean Medical Center in Brick...the radilogist said that girls were comming in with a tatoo over their mastectomy site........Liz
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cgesq...
I had BMX and recon, and my recovery was not bad... after MX you will need to spend time recovering no matter what recon you get (even no recon), so recon recovery really didn't add that much extra time. I am now almost a year post BMX/recon and have no pain, have cleavage etc. I chose to go with no implants and had DIEP and GAP flaps. I did travel to New Orleans for the procedure as those docs are the most qualified with this surgery. No regrets.
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cgesq - You'll make it through, and before you know it, you'll be on this side and looking forward, not back. Enjoy your London trip! What concerts?
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Queen, with Adam Lambert as lead singer! (I grew up on Queen and am a huge Adam Lambert fan, so the chance to see them together was too much to resist!!) A group of my friends are meeting up in London and we are seeing 2 out of the 3 performances. I can't wait! 0
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Hi everyone,
I am new to this board but seeking advise. I am currently going through chemo and it has been a struggle from the start. I have four TCH sessions done and two to go, with the weekly dose of Herceptin mixed in. I was aware of the fatigue and nausea that are expected but my biggest issue is more like anxiety. I start having full body shakes, numbness and tingling, lightheaded, rapid heart rate, weakness and horrible nightmares about two days after chemo. It lasts for about four or five days and it is very scary. I am wondering if it is the steroids that are causing this reaction. Anyone else have this issue or heard of this SE?
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Hi Lori - I see that you have also reported this SE on the Treatment board - I am hoping you get some good answers there. I would suggest that you speak with your medical oncologist - call him/her even though it's the weekend. I hope you feel better!
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Lori - Definitely check with your doctor. Are you taking decadron, and how often? (I only took it for three days each cycle, but I know a few women who had to take it more frequently). That can cause jitters. And your MO should be able to prescribe some anti-anxiety meds if you're not already taking them. Good luck!
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I was diagnosed in May, 2002...I found the lumps myself, went to the gyn md, and told me to call Dr. McManus. I called her on the Friday before Memorial Day Weekend, and she had me come see her on Monday, Memorial Day!!!! That woman works all the time!!! Anyhow, she didn't think it was cancer - most likely a fibroadenoma - due to my age (43), and no family history; but she wanted to have it removed. Well, as I'm waking up from anesthesia, I was told it was definitely cancer. I decided to have a mastectomy - Dr. McManus did the surgery, and Dr. Philip Wey was my plastic surgeon. I highly recommend Dr. McManus to everyone in the area. Dr. Wey works out of RWJ - he did a fabulous surgery - but I wasn't thrilled with his personality. My Onc is Deborah Toppmeyer at CINJ - love her too!!! I am a NYC girl, and I was tempted to go to sloan, but living in NJ I thought it would be easier on me and my family to stay closer to home...I am very happy with my decision and would recommend all of my doctors to anyone.
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cgesq: Have fun in London. I am so sorry that you have to join this group. My mom and sisters both had breast cancer as well as my aunts on my mothers side. It was just inevidable I guess for me. I also had multi focal cancer in right breast and triple negative in left breast. They could save the left but not the right. I opted to do both. Because I knew I would reconstruct at a later date, my surgeon gave me some good advice. She said the non recontstructed breast will always change. It will gain weight, lose weight and over time start to sag. The reconstructed side will remain the same. It will be difficult to match and your breasts still might not look equal. It is for this reason I did bmx.
There is time for you to consider reconstruction, what type and if you want it. I have been reading about fat grafting as a way to reconstruct. This might be an option for you when/if you are ready. I wish you well!
Taismommy: glad your surgery went well
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Hi All
At the MO's today in Center City where I was yelled at for not taking tamoxefen. The drug that made me miserable.
She considers the only thing acceptable are: tami or ovary removal .
Basically told she was the expert who am I to question. I stated that I would consider taking fareston (she would not RX it) and also told that 10 mg was not acceptable.
Honestly, a shty experience. Also she does not approve of Lupron shots- I am agreeable to this.
Oh yeah - pre menopausal- 51.
Anyway. I HAD a great MO but she moved to California. I watch my weight, exercise, diet, take Metformin, take supplements.....
Had a bilateral for my 20 point tumor (3.8mm)(onco score=1)
I live an hour from Philly and an hour and 15 minutes to Somerset, NJ....Tried to go to Sloan Basking Ridge but they won't take me (NED).
Ideas?
thanks,
Chocolaterocks!
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Hi Chocolate: What kind we help you with? Are you looking for suggestions for a doctor who will treat your ER/PR+ tumor with something other than tamoxifon?
What's a "20 point" tumor?
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I, met a lady when I was getting my Mamo at Ocean Medical Center in Brick and she did rads but would NOT take Tamox and she said she really read up on it....her daughter who was in nursing was pushing her to take the drug and that was 15 years ago.....I knew from the beginning that this was my show and I was running it.....Liz
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Chocolate, I went to Philly Thomas Jefferson for my BMX, but since I had a BMX for DCIS, no Tamoxifen. University of Pennsylvania I believe also has a good reputation. Robert Wood Johnson in New Brunswick is a cancer center, and there's a branch of it in Hamilton, NJ. I went there and met with a very lovely young oncologist before I decided not to do the radiation/ Tamoxifen and instead did the BMX.
Charles Simone in Lawrenceville NJ does a lot of work with vitamins and diet. He also believes in traditional meds - he is an oncologist and radiologist. He does peddle his own brand of vitamins. I do know people who've done very well after seeing him.
I live in Trenton, so I'm probably not all that far from you.
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