NOLA in September?
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SO well said Nancy! Just finished stage 2 with DR D Dec 14 after many previous fiascos. I am BRCA2+ and my sister did the prophy double Mx and oopherectomy. Honestly if you are done with having babies and high risk I dont see an alternative, in our case with BRCA. Ovarian cancer is the silent killer and after talking to the geneticist at Northwestern in Chicago we worked with he said we would have a 96% chance of ovarian cancer after menopause with BRCA2+....TOO high to take the chance and we both still have children we are raising that depend on us. GOOD LUCK you are in great hands!!!
Regards
Lesley
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96%? That seems high. Does ovarian cancer run in your family? The usual stats quoted are 40-50% for BRCA+, and BRCA1 tends to have a higher risk than BRCA2.
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4mybabies... I think you are spot on. And yes, its a no-brainer. And yes, if doctors aren't familiar with it they don't support it.
While I was in NOLA I met a nurse Teri who had the gene and had the prophylactic MX and DIEP flap, and was happy to show me her results. And a touch too. She also had lost a sister to cancer, because her sister wanted to delay to have her kids. Teri has had a lot of loss in her family and has zero regrets for making her decision. You too are making the right choice. And only you can be the one to make that decision. You will be great! You are just two weeks off.. just stay relaxed and have 100% faith in the doctors.
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4my4babies, I am BRCA2+ and this was a no brainer for me too. I am 35 and I traveled to NOLA for my bilateral MX with SGAP reconstruction in June 2012. My pathology report came back showing DCIS in my left breast, which knocked me to my knees thanking God and just so glad I had gone through with the surgery. Only you can make the decision on what is right for you, but in my opinion you are making the right decision.
Good luck and know you are in the best of hands!!!
Chelle
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jeskachi, I do not know what statistics others are given but we were told in the 85% range for breast cancer if you have the gene and do nothing and even higher for ovarian cancer. I can look up the geneticist name but he was highly recommended I am the first in my family to have breast cancer but due to my age and stage I was presented to the tumor board at UC - Davis. I was treated at the Tahoe Forest Cancer Center in Truckee CA and they have an affiliation with UC - Davis. Tumor board suggested the test and to my entire family's surprise I was positive. I am from Chicago, moved to the Tahoe area 5 1/2 years ago. My sister lives in Lake Forest and was tested by NW Drs. We had a consult, me on the phone and her in person (not many geneticists in Tahoe area : ) ) and we were given a whole list of higher risks and percents. We both are in our early 40's and have already had colonoscopies we are at higher risk of that and get screened every 5 years, an ocular cancer, melanoma ( I get a full body check annually) and slightly higher risk of pancreatic. I would have to dig up the report, but when my sister was weighing her choices he said if my wife had this profile I would definitely advise her to have the prophy BMx and ooph...since I was already stage 3 A there was not much of a choice I did the BMx and ooph along with chemo rads...
Numbers are numbers but some are pretty staggering including what my oncologist told me when I was ready to throw away the Arimidex....I switched to Femara and grin and bear it.
:es;ey
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I'm going to assume there were other factors in your genetic profile that gave you that unusually high risk for ovarian cancer. That's why it's important to see a genetic counselor, they have the tools to assess your personal risk. It sounds like it was good that you sought one out and got their assessment, vs. relying on more generalized estimates. Having said that... I've never heard someone with that high of a risk for ovarian cancer, even with a BRCA mutation (I have a BRCA mutation also, live in Chicago and consulted with a genetic counselor here).
From the FORCE site: "Estimates for ovarian cancer in BRCA mutation carriers also include the risk for fallopian tube and primary peritoneal cancer. Experts don’t know the exact lifetime risk for women with mutations and usually present a risk range from 10% -60% lifetime risk."
http://www.facingourrisk.org/info_research/risk-factors/ovarian-cancer-risks/index.php
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Thanks I am registered with Force too I guess I will have to go back and ask why so high : )
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While I did not undergo genetic testing (it wasn't really readily available), I do know that there are some ethnic groups that have higher percentages of bc and ovarian. For example - Eastern European Jews. While no one in my mother or grandmother's generations had cancer (only 1 had skin cancer), one of my cousins had bc the same year I did (and lost the battle). Another fought ovarian for 7 years before succumbing. They were granddaughters of two of my grandmother's sisters. When I had my hysterectomy, I had an oophrectomy because I didn't want to have to worry. The doctors have suggested that there is something familial, but since none of the 3 of us had natural children no testing has been done. We will leave that to others of our generation.
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4my4babies, Wow, that was so well written. I wish you speedy healing with your surgery. You have chosen well and are in the best of hands. So sorry about your sister. Hugs, J
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i cant believe i'm next up on the list! i leave in 5 days! wheeee!!
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Please keep us posted! Where are you staying?
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Zandy - i just realized that you are in the Seattle area! I wish you could have met up with us last weekend! You are going to be great!
Leigh Ann- I was sad not to get to meet you! But I definitely understand! Maybe another time!
Soccer mom! (((((()))) I miss you!
As for the decision to have prophylactic mastectomies... That is a completely personal decision. I tested negative for the BRCA genes, and initially had a unilateral mastectomy.
Almost a year to the day after my diagnosis, my sister was also diagnosed with BC. At that point I became so worried about getting BC in the other breast, that having a prophylactic mastectomy on that side was necessary for me to kind of move forward in my life! My family's history includes an aunt that had BC, an aunt and a cousin that had endometrial (uterine) cancer, then my sister and me, both with BC. The odds were definitely NOT in my favor! My insurance at the time did not give me any kind of grief regarding the prophylactic mastectomy! The choice should always be the patient's!
And as for the MD critics of NOLA... HA! For whatever reason, so many MD's have a hard time admitting that someone in another state could possibly do a better job than themselves or the local alliances (local PS's), that they immediately try to dissuade people!!! After my failed tissue expanders (that were in for 18 months, before the right one decided it would like to make its way out by itself), I went flat on one side and concave on the other for over a year while I tried to figure out what I was going to do. My degree is in physical therapy, so I knew from the start that I was not going to allow anyone to utilize even a stitch of muscle to make a breast! There was no one locally that did DIEP, so I traveled for consults - to the two practices that were in network at the time. One told me they could get an A cup from my belly, the other told me he would never use my belly as I did not have enough fat, but could get D cups from my hips. I ultimately did not go to him because his patient informed me that as much as she loved her breasts, the indents on her hips were such that she had to wear skirted bathing suits to cover them. He confirmed that it would be a trade-off. I nearly lost hope, but one of the docs had mentioned the Force website during my consult, so I started researching. I had already known about NOLA from before my expnders were placed, but at the time thought it would be too much to travel with a toddler at home. Well, now I had 2 little ones and it was my last hope. I have never looked back. Dr. Sullivan made me whole again... And not just my body, but my mental state as well. Breasts were something I did not even realize I missed all that much! And unlike thenother doc, I did not have to trade off having boobs for my butt - Dr. S goes back and fixes things! As for having a consult ahead of time, I did not. I had already exhausted most of my funds flying around the country to the other docs, but it was not a problem! Both docs had seen my pics beforehand and both had said I had nowhere near enough fat for bilateral DIEP. When I saw Dr. S the day before my surgery, he looked at me and asked me how big I wanted my breasts (I wanted a large B/small C) and based his decision to use hips alone (rather than stacked DIEP and hips) on my wants. I was lucky enough to have a local PS who is compassionate enough and secure enough in her own abilities to stand behind my desire to go to NOLA. She has now sent an additional 3 patients (that I know of - there could be more) to the Center. So my point is... Forget all the naysayers that will not stand behind you! The short version of what I really want to say is: If YOU want to go to New Orleans, then I think you should go. Do what is best for YOU! You are your own best advocate!
Besa and Bettye! Hi!0 -
Nordy can I hit the LIKE button!!!
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Hi Ladies-
I am a little over 2 weeks post Stage 2. I have a noticeable red area above the incision line over my hips and lower stomach area. I presume this is all part of the healing process?
Also I am still wearing the garment from the Center. Plan to do so for about another two weeks. My swelling had really improved yeah! However I am still pretty swollen around the incision area on my stomach from when Dr D removed from loose tummy skin from weight loss. I presume this will take more time than the other areas? Did it take a while to wear jeans/dress pants again without the garment on? I am not sure how pants will feel over the hips and tummy area. My incision falls right by the underwear line. Just curious what others experiences were...
Zandy- We will all be thinking of you. You will do great! Try to also take some time to enjoy NOLA. It is a beautiful city with some great food.
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Kerry,
It took me a long time to feel comfortable in regular pants. I have since only purchased low rise pants as they are much more comfortable. Two weeks really isn't much time to gauge anything... I would wait another 4 weeks and see how you're doing.
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KerryA, I had some large red patches just under my hip incision (aka my "Champ Stamp") that have slowly faded over the past 3 months. They looked like a cross between stretch marks and a rug burn.
I found that most pants were comfortable when I stopped wearing the garment, but my hips became much more sensitive at about 2 month post-Stage 2. I started to regain feeling in the hip area at that point and was more aware of jeans that were tighter in the hips. At 3 months out, I'm feeling it less. I'm sure the abdomen work adds a whole new dimension to the discomfort!
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4My4,
Welcome! I added your Jan 17 surgery date to the list.
This is a big surgery, but you are spot on to do it and "jump the gun" (I mean DOY!). You will not be sorry. The worry will be gone, and you will have beautiful breasts. I am sure they are doing skin and nipple sparing, it's just like being "restuffed" with fat that can't get cancer!
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Thanks Springtime! I am really pumped about....wary to be sure. But I know it's the right thing. And yes, nipple and skin sparing for me. I was telling my Sunday school class about the surgery this morning for the benefit of those who hadn't heard and I used the re-stuffing the pillow analogy. That is exactly how I feel about it.
I've had people ask me about getting counseling but I really don't think I need (or will need it). I'm not opposed to counseling at all, but I'm just in a really good place about my decision and don't feel like I'm losing anything except worry and excess belly fat! I've lost a good bit of weight over the past few years so see the tummy tuck aspects as an added bonus. While I could certainly use a tuck to tighten thigs up, I would never pay separately for plastic surgery to do it.
I'm very blessed that my husband is 100% behind me. We adopted our four children from Russia when they were babies and we are "older" parents. We certainly don't want our children losing me and neither one of us want to go it alone raising 4 kids! Plus, he jokes that he is more than willing to "take one for the team" to keep me around and for me to get perkier boobs. Lol. He's got an uneasy stomach about hospitals though and says he may need just as many prayers as I do. But I know he'll do fine and will do whatever he has to do to take care of me. Mostly he's scared about losing me through the process so we will both be relieved when it's all over!0 -
4my4... Your husband will love the hospital and they (the doctors, nurses etc) have a knack of making you feel at ease. They just exude a calm and confident feeling.
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Hi All,
Been awhile since I've been here, soo nice to come back to the board & see what's been going on with everyone. I'm having my Stage 2 with Dr. D this Thursday 1/10. Stage 1 was 9/5 - bilateral mastectomy with gluteal hip flaps. I had a great experience, was blessed to have little pain & a fast recovery. Getting a little nervous as I feel like I had a better handle on what was happening at stage 1 & was better prepared. Any hot tips for stage 2?
Zandy, hope I get to meet you but I think I'll be discharged on your surgery date, so we may be two ships passing in the night. You've made an incredibly smart decision. These doctors are top of the line and take amazing care of you.
Nordy, oh my gosh - couldn't agree with you more. When I was doing all of my reconstruction consults, a local PS told me he would never do a flap on me due to my size. Fast forward 6 weeks - Dr. D worked his magic with bilateral hip flaps & everything came out wonderfully. I ended up having a mild seroma that needed to be drained about 8 weeks post op, so called this local PS - his office staff said no problem, come on in. When I saw this PS, he had me in tears the way he was speaking to me. He was clearly miffed that I had proven him wrong and now was coming to him for help. He was so nasty and unprofessional. His office staff apologized for his behavior but he did not. Had I known it was going to be an issue, I never would have made the appointment with him. It never crosses my mind that an adult professional will act this way, but I suppose the ego is a powerful thing. Lesson learned!
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Spring, Thank you for the kind words and for keeping this site going. You, too, Betsy!
My hip bones are sensitive as well but nothing that really bothers me. I just avoid certain jeans for now. I am happy to have feeling and think it will calm down. My weird numb thigh is slowly getting better. I am relieved.
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Russell, not sure where in SoCal you are, I'm in Orange County. You probably saw some of the same doctors I did, who said I "didn't have enough." I didn't believe them and Dr Sullivan certainly proved them wrong.
To those who are new to this thread, you've found the right place. My local breast surgeon and her affiliate MO were so aggressive about trying to convince me not to get a DIEP and not to travel for surgery. The BS said that my body would be mutilated by a Diep, I'd never be strong again, or exercise again, etc. Only with the support and encouragement of these wonderful women did I have the courage to go ahead with the travel and the surgery.
I just started physical therapy today for knee surgery that I had on 12/24; and frozen shoulder that I had after my stage 2. The therapist said that my shoulder is much worse than my knee, very limited range of motion. I probably should have done something about it sooner, especially when i was supposed to be walking with crutches and kept falling because of the shoulder, what a disgrace:). But she was shocked at how much core strength I had as she watched me get up from laying on the table. She couldn't believe I'd just had my stage 1& 2 within the past 7 months. Those who are trying to talk you out of flap surgery or out of traveling to NOLA will tell you all kinds of horror stories, shockingly even outright lies, and I still don't umderstand why. But I have NEVER once regretted my decision!0 -
I think a lot of people, even doctors, equate DIEP with TRAM because that's all they've ever personally seen/known/heard about. When I mention DIEP to my doctors the first response out of their mouth is always "oh, you had that TRAM surgery?". Maybe not so much with other plastic surgeons, but for non-PSs their knowledge of the surgery seems very, very limited. Either that or they assume you had it in town, and in town the only option is TRAM, so they assume you got it wrong. Anyway, I think that's where the assumption of "mutilated" and "lost strength" comes from.
Good luck with the PT Jenlee. I bet it'll take care of the frozen shoulder.
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Jenlee I am in Rancho Cucamonga, Ca. which is in the Inland Empire. My plastic surgeon is in Orange County. I really love him and his office staff. However, he doesn't do the hip flap surgery and wants me to do the lat flap. I don't want to lose muscle and feel I would have trouble with implants since I've had radiation. I told him yesterday I had scheduled at Nola. He looked surprised and told me to come and see him after. He wants to see the results. Thanks for making me feel secure about this decision. It has been a hard one!! I'm so glad you are happy with Nola! I hope your knee and shoulder are on the mend.
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Russel it sounds like your OC doc might be a willing helper doc if you need one back home. That is a good thing, as many are not.
Sounds as if it is all working out for you .0 -
Hi ladies...just wanted to share some good news. Had my pet scan on Friday and Onc says it is all clear and my tumor markers are back in the normal range!! woo hoo So happy. Also got approval for more hyperbaric treatments to try to ge the belly to close up. It is getting better just a slow road. Feeling like I am breathing again....just in time to turn around and do this all again in March
Maggie-2
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Great news Mags!
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cascader..yes he is willing to pull drains and check sites:) I am so grateful for that. He is wonderful! Mags...I am so relieved for you! I am having a glass of wine in your honor this evening with dinner! Hearing good news on those scans is a big sigh of relief!!!
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Congratulations Mags, I know that has to be a big relief. Jamie
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What a relief Maggie! Congratulations!
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