Calling all Stage II Sisters!!!

cp418

bdavis - you described exactly what I feel now and will discuss at my next appt with my breast surgeon.  The anxiety is really getting to me. I would not take it well if it returned in the other breast and needed chemo again. I certainly could justify doing treatments again for mets but not to go through it again for a breast.  At age 55, they simply are not a priority to me.....my life and surviving is.

bdavis

At 48, I am done needing my breasts and they were trying to kill me... so I look at it like re-stuffing a pillow... Taking out the bad stuff and re-stuffing with something else (in my case I used hip and ab fat)... Yes, the recovery is not a cake walk, but I do hope that in 6 months I will be almost normal... So I have donated 2011 to cancer, I am not giving any more of my life to this disease if I can avoid it. And my family has longevity, so I plan to live to 100... I refuse to spend the next 50 years getting monitored.

cp418

Exactly.....  I am now getting a colonscopy every 3 yrs because my father had colon cancer, his sister had breast cancer and I had breast cancer.  Way too much stress to deal with long term with these monitoring examinations and tests.  Plus you are told to elminate stress from your life.  So where is the icon for rolling eyes!!  Seriously!!

mumito

So many of us have had the other healthy breast removed.I don't regret it at all.

Paula66

I did it so I wouldnt have to face BC for a 3 time.  Im not that strong to do it 3 times so I had them both removed.  I dont regret it either.

bdavis

FOR SURE... once is enough, 2 times is bad, 3 times would be awful.

Ralsper

I didn't do it because nobody suggested an I was so afraid of the surgery at the time that I didn't even ask. They talk about lumpectomy and when I decided to do mastectomy I though I was being radical. I thought I did a full research and I made the right choice at the time, but definitely I will talk with my MO about removing my right breast during reconstruction. It was never about losing my breast. I was not consider "high risk" and my right beast was healthy, so.... Anyway, I hope they do not tell me "no it can't be done now" or have "insurance issues".

bdavis

I can't think of any reason it CAN'T be done, so you shouldn't hear that.... and I also have never heard of insurancce saying you can't have a prophylactic MX either... Do what is best for you... I had 4 doctors tell me a lumpectomy was all that was medically necessary, and I chose to have MX to be safe... it was  a hard choice as you know.

cp418

I finally met with a genetic counselor today due to a strong family hx on mothers side, father had colon cancer and his sister had breast cancer.  (mother had breast cancer, her 3 brothers all had either prostate or kidney cancer in later years --- all alive and doing well.)  However, since everyone was dx in their 70's and there was no ovarian cancer, I was told very unlikely BRCA influence. I was told definite familial cancer hx where we are suceptable with some environmental triggers. Interestingly I was told the colon cancer - breast cancer link is not as strong as previously thought and is unlikely. However, this information has not out there to patients and medical staff.  Maybe now I can get colonoscopy every 5 yrs instead of every 3 yrs!!! 

Also, discussion about getting script for MRI every other year and this is strongly opposed by the insurance companies unless BRCA positive.  So it looks like I will be unable to get any MRI as I had hoped.  I see my Breast Surgeon the of this month and we will have this discussion.  If I cannot be monitored every other year with MRI because we allow insurance companies to dictate medicine - - then they can pay for my PMX.

bdavis

I have to say... I currently have great insurance.. they paid for MRI, MRI biopsy, chemo, BMX, recon... no problems... but that could change. Every year my coverage goes downhill.. so one (of the many) reasons I chose BMX is because who knows what tests I'll be allowed to have in 10 years and if I then decided to have BMX/recon, who says they'd pay for it...

cp418

I was told former patients with lumpectomies would not be monitored with MRI even if the pateint requested the for alternating years.  It was an insurance decision to only cover BRCA positive patients.

bdavis

Nope... I am BRCA negative... Had I not had a BMX, I would have had 2 MRIs a year.

mags20487

I too opted for the BMX and do not regret it at all.  When pathology came in after surgery there was LCIS in the "clean" breast in three places and they did not show up on mammo or US tests.  The surgery for me was a no brainer with trip neg tumor and possible lymph involvement with was proven at surgery..see below my dx line!  I agree with bdavis...I am done with them now..fed my 2 babies with em and do not want to do this again in a few years!

Maggie

cp418

I don't know why every time I ask for alternating MRI --- I get turned down.  I have Horizone BCBS.  Very frustrating but at this point I am going to inquire for PMX without recon.  They've worn me out with these exams and having to debate and question them.......

bdavis

I think depends on insurance... And i had one doctor recommend a baseline MRI post MX and then every three years for about 10 years... Just to watch chest wall and nodes... I will request this, but insurance may not be happy after dishing out $600,000 for my mx/recon

slousha

Dear Stage II girls,

Dxed in 2009 I was said I'm Stage IIA, according too NCCN BreastQuidelines 2011, I'm Stage IIIA becuse of high number of nodes.

Greetings and by,by...

Usha

Ralsper

Bdavis - Well, you donate 2011 to cancer... It seems that I will be donating 2011 and 2012! I was diagnostic on 4/6/2011 and my last chemo treatment will be on 29/11/2011, so if I decide to have PMX and DIEP, I will be ending "donating" 2012 as well. Anyway, I have couple of question. I am assuming that you have your BMX and your DIEP at the same time, after chemo, how long did you have to wait? Why NOLA? You said that you have complications after GAP, sorry what is GAP and what kind of complications did you have? 3 surgeries in NOLA? What kind of surgeries? When did you begin taking tamoxifen?

bdavis

Hi Ralston...My diagnosis was last November, so I also donated Nov/Dec 2010... oh well...I ended chemo May 10th and had GAP (hip flaps) surgery with my BMX July 21st... that was the outer edge my MO was comfortable with, but I had a vacation planned July 9-16, so thats when I had surgery... Ideally it should be 6-8 weeks post chemo. So, on July 21st I had BMX and GAP flap surgery in NOLA but my skin was very raw and blistered on the right side due to the MX and getting too close to the skin, so my complication was the right breast incision opening up after 2 weeks and leaking bloody fluid... It got worse and worse until it was a hole the size of an egg... So NOLA flew me back down for a wound surgery and then a DIEP surgery to rebuild the right breast... Had the DIEP on August 23... So those are the 3 surgeries, GAP/MX, wound and DIEP all between July 21-Aug 23... I also had a port removal surgery in there too because my port got infected and had to come out... had that surgery at home... and it also caused a blood clot, so I was taking blood thinners while heading back to NOLA. So... why did I choose New Orleans when I live in NJ? Because Dr Dellacroce has done over 2000 DIEP/hip flap surgeries so the experience is suberb... their hospital is the only hospital in the world dedicated to breast reconstruction, so I knew the nurses would be pros at monitoring flaps, it is a first class operation, from the minute you send in your paperwork... And most importantly, after meeting with other doctors, I knew Dr D was a perfectionist and wants me to be perfect, not just satisfactory... and I want my doctor to want that for me... I had a consult with a surgeon in NYC who said I COULD have stage II or just go to the gym.. no no no.. make me right and then I'll go to the gym. This was in response to a question I had about contouring and blending in love handle fat. And last, I will start Tamoxifen this winter when surgeries are behind me.

dixiebell

Dr Dellacroce was my recon doc and did me too I even have the t-shirt. I wanted the flap but did not have enough fat so he recommended the all in one allederm recon. I am finally getting used to it. I will go back in November where he will liposuction fat from my back and insert over the pec muscle and at the bottom over the implants to make it softer and more natural and rounded. I love this man and yes he is a perfectionist. My surgeon was Dr Stollier and he is wonderful. I did a ton of reaearch to get these two gentleman. When I was there, there was one woman from new orleans 2 from london 2 from ca - beverly hills and malibu and one from somewhere up north can't remember. So people do come from all over the world to see these gentleman. Dr Sullivan is his partner is also wonderful. That is all they do all day every day!!!!Breast recon. I live about 50 miles away from there is anyone has question please private email me.

bdavis

Dixiebell... I was wondering where you went.. I knew you were from Covington and hoped you had gone to the CRBS... I also had Dr Stolier. Dr Dellacroce was my lead surgeon and Dr Sullivan assisted.

dixiebell

bdavis: Are you completely done? If not when you come back please lets get together. I'd be glad to help in any way.

bdavis

No.. not done. I am flying back Nov 13-18 for a Nov 14 surgery... I just started this part of the journey in July... Just had a lot of surgery so far.. What's your name?

dixiebell

I am actually doing my touch up the week of Nov 7th no sure date yet. The next week was booked already. Oh and I saw him today no bra for 3 months so I went cami shopping. Glad I asked!

coraleliz

Bdavis-Wow! Can't believe what you've been thru. You might want to look into Tamoxifen use in women with a history of blood clots. I believe I've read that it might be contraindicated. You might need to go with an AI.

bdavis

I only got the bloodclot because of the port... apparently it isn't uncommon... It was right at the clavicle where the port was stuck... they had to cut me at the clavicle to get it out...  But that is why my MO is waiting til surgery is all done before starting me on Tamoxifen... he doesn't want to complicate matters.

And Jamie... there are a bunch of ladies there that week I think... I will down there with my mom, staying at the Homewood Suites on Poydras (in the hospital night of Nov 14)... So you saw our doctor today?? Lucky for you to be able to pop in whenever. Where was your house pre-katrina?.. Probably should ask that question on the other thread...

dixiebell

Its fine- I lived 2 blocks from lake ponchatrain and the levee. Where I was levees were overtopped and the pumps were not turned on  - walla 5 feet of water in my house. To make matter worse my second story was looted so what did not flood was basically stolen.

bdavis

Oh no... I lived there for 5.5 years back in the 80s... all rains caused flooding and I remember many hurricane warnings... we never took them too seriously... Everyone believed in the levees... I think the lakefront is so sad now... I remember going to the yacht club, and also hanging at some great bars on the lake... all gone now.

I lived in Uptown which was always a little higher also.

dixiebell

Did you go to Tulane? My ex husband and his brother were football players there 1982-1987

bdavis

Yes, I was there 1981-1986... I didn't know any football players though... what did they study?

Ralsper

Bdavis - How did you find out that your port got the bloodclot? What kind of complication can arise you start Tamoxifen?