Charleston Bound, part 2

Cascader, even with my lumpectomy in 1994, I was told to check back with my BS periodically. 3 mos, 6 mos, 12 mos for about 10 years. I also had a MO and RXO, and saw them periodically as well (the MO more). I plan to use Dr Baron as my go to guy for yearly or whatever he says checkups. I too am sold on his expertise in this area and my docs here have NO CLUE!



We still have a slight chance of a microscopic cell being left behind ( from what I've read) and I want someone who knows what he is doing to be in charge of me to make sure I'm not taking biopsies or other means to rule out another bc.



Hugs

My OC has me doing a baseline MRI and then wants them done yearly or every other year. My PS says every year. My BS wanted to do a mammo and my PS wrote her a letter about why you should not do that with our DIEP flaps. I decided to quit the BS as I shouldn't need her again and she just wasn't that supportive of my surgery.

Montrial,

You will not find a person more convinced than myself that serious consideration must be given to doing both breasts.  I firmly beleive all women with BC should get genetic testing.  There are other genes than BRAC that pass BC.  It is possible that no women in your family have BC but you still run a hgih risk.   My genetic condition is associated with colon cancer and only the men in our family got it.  BC was something "our family didn't get"  Turns out the gene has a 50% chance of BC.  It passes down to men and women.  But in our family we are almost all boys so no BC. Lucky me!

Personally I think it is a more insidious gene than BRAC as it passes to an from both sexes.

No one ever mentioned getting both down.  When I sked, I was told the AMA does not reccommend it.  Had I konw I could have done it I would.  Every six months after my first round of chemo, I had either a mammo or mri.  That 6 month rotation is the current AMA guidelines.  I almost always ended up with a questionabel area and then a biopsy.  No one ever told me that since I had a breast revesion on the other breast to match the reconstruction, tests were hard to read.  One month the tests were clear.  Six months later I have a 7 cm tumor and 15 positive nodes.  I don't beleive for a minute they got there in 6 months.  And the stress of the exams was enough that my Dr. recommended antidepressants.

I had to have another mastectomy, more chemo and more radiation.  Now more surgery and no implants becasue of radiation.  No DIEP cause that ship already sailed.  Once the SGAP breast is OK, reconstruction on my previous DIEP breast for more symmetry.  New nipples on both.  Don't know about more surgery on my butt but maybe.

There is NO way I would reccommend this path tp anyone.  SUrgical techniques now are so good that the loss of two breast is not any more disfiguring than loosing one.  THe results are often better as Drs don't have to try to "match" a natural breast, they can reconstruct them the same.  Bi-lateral Recovery may be a little more difficult than uni, but no where near as bad as recovering from two operations.

My onncologist ( changed for the second round) says he doesn't recommend it (AMA again) but his Physician Assistant says when asked she always recommends bi-lateral.

I can not tell you what to do...it is a matter of personal choice.  I can only tell you my personal choice.  Especially if anyone in your family( mother or father;s side) has had colon, endometrial or breast cancer I urge you to get tested prior to making the decsion.  These days most insurance companies cover it if there is any possibility and it is a simple test.

I feel a need to chime in too. My first diagnosis (invasive BC) was 11 years ago and I was always having MRI's, ultrasounds, mammograms and biopsies. My genetic testing came back negative but I have a strong family background of hormonal type cancers. Two years ago I was diagnosed with ADH. A pre -cancerous condition in the other breast. This raised my odds to 40% in my lifetime. not okay. I was told I would be doing a mammo and 6 mo. later a MRI indefinitely. I decided to do a prophylactic BMX. It has been a long year, but breast cancer isn't my worry anymore and that is a HIGE relief. I feel like my DIEP saved my life. It was a great decision for me.

I just booked my flight..my husband called while I was doing it,told him I was still hesitant..he said "DO IT!! You got through chemo and herceptin and all the complications,you can do this and I know you will be glad"..this is really going to happen..does not seem possible after all this time...I had a prophylactic mast a year and a half after my first,very dense breast..I only wish I had had it removed at my first surgery,but guess it was good I tried being a uni..also glad I tried the flat route....no regrets here for having the healthy one removed..and like everyone says will make it easier for symmetry....hope everyone is doing well..I am kind of in a daze!

I had bilateral DIEP with Dr. Massey. She recommends a bilateral breast MRI every year for monitoring.

aspinner, Welcome! I'd vote for the mini-vacy, because I like mini-vacations! But, you could do it over the phone with no problems. It may ease your mind to come down for a face to face. As far as lodging, there's all kind of lodging around from condos to hotels, low-end to high-end! AFter my first stage, I stayed at Wild Dunes in a beachfront condo (it was off-season and cheaper). They request you stay at least 10 days afterward.For Stage 2, we will be staying at Sandpiper which is a retirement village. I have not seen the Sandpiper yet, but understand that it is nice & cheap ($85 p/night for 2 br) & is equipped for those not moving around at 100%. When I've gone for dr appointments, we stayed in hotels. So there is plenty of options as far as accomodations.

After care is a bit hard for me to determine. My mother did most of that but other than lifting and the shots, none of it was too demanding. Pain was well managed and I was very mobile. So I would not think it would be too much of a burden.

The surgeries are a committment though and you have to be ready for that.

I just realized how bad I type.  Sorry guy..it's the trifocals!

where is GR? 

Hi,aspinner,I sent you a PM!

aspinner:  I know where you are coming from.  I am just ahead of you on my journey for reconstruction.  I recently contacted Dr. Kline and Craigies office to get the process started.  My husband and I opted for a face-to-face visit with Dr. Craigie, so we could not only meet the doctor but also check out the facilities (hospital, places to stay, etc.) prior to travelling there for surgery.  My initial appointment is scheduled for Mon., Aug. 26.  We will drive over from TN on Sunday, have our appt. on Mon., enjoy the area a little, and drive back home on Tuesday.  We will be staying at Homewood Suites (medical rate $119/night) but that includes breakfast 7 days and dinner Mon-Thu. (great for when we have to stay for 10 days and makes the rate more reasonable).  This rate also includes comp. wine or beer (which your husband might enjoy).  My surgery is tentatively scheduled for November 7th, and we have already made reservations for that time at Homewood as well.  If we don't like it during our Aug. visit, we can seek out other accommodations and make the change.  I have been told it is very convenient to the doctor's office an hospital, restaurants, shopping, etc.  I had a unilateral mastectomy in Dec. of 2008, and I am just now getting the ball rolling for reconstruction.  I have a job with little backup if I am off, so this has been a concern/problem for me.  I am in my 60's, too.  My dilema now is whether I should have the other breast removed and a bilateral reconstruction or just go for the one now and hope and pray for the best with the other.  Anyway, I will be glad to let you know how things go for me, as you should be right behind me, that is, unless you go ahead and schedule your surgery sooner.  If that happens, you can fill me in on what to expect.  Best of luck to you (and your husband as caregiver).  Let me know if I can help in any way.

I'm piping in on the bmx vs umx - having had 2 bouts of bc 17 years apart. Not even a glimmer of doubt as to do both sides. 1994 = Lumpectomy on Rt breast (took most of top half off) and then in early 2012 Lt breast with new bc. No doubt- no thoughts, just knew it was time to let them both be taken off and recon started!



I did all they told me to do, chemo, rads, lumpectomy (0/17 nodes) did it all, and still developed different, new cancer in opposite breast. A no brainer to take them both in 2012. In November I will hopefully be in Cascader's shoes, doing the last of the finishing touches to the breast area with the nipples and will then have to wait for the aeroloas for Vinnie.



Hope this helps, Montrial. I am also in my 60's. My first bc was in my 40's.



Pink, I have my appt scheduled for Dr. Baron in early November. Ladies, if you've had Dr. Baron, you know he's tops at this kind of thing, and probably will be seeing him at least every year for many many years to come, so hoping to make it an annual November thing and rent a house and have a 'boobday party" with other of you all to just get together, see Dr. Baron, relax at a beach house type thing. Having fallen in love with Charleston, will be a good reason to go back! Right Deidre?



As for face to face consults: I had the opportunity to talk to Dr. Kline and Gail, asking my questions each time I had one. I never thought about going for a face to face as I was trying to keep DH's vaca days for the surgery. I came down 2 days early. The first day was driving the 6 hours to get there, the second was filled with MRA, Dr. Kline, Dr. Baron, and the hospital to pre-check in. I was listed on Hope Lodge's reservation list and called to ask what my chances were and spoke to Priscilla. I had active cancer at that time. After Dr. Kline's office listed me, that is. Priscilla is the Hope Lodge reservation guru with ACS. I was lucky enough to get in and we were able to check in before the surgery, the night before in fact. That meant my stay for stage 1 was zero out of pocket for hotel, Dr Baron and Dr Kline as I had met my deductible prior to coming.



I too have stayed at Homewood Suites and they are my favorite for convenience, parking, walking to stores or food, and close to the beach.



Best of wishes for all just starting and for those continuing!



Hugs

Hi a spinner,



I too am from the GR area and chose to leave Michigan to do my surgery. My doctor is the same as Marty J. However, Dr. Massey does her stage 1 in New Orleans. After that she will do any stage 2's in Charleston or Chicago. Going to Chicago has saved me a lot of money. Feel free to PM me with any questions you might have. All of these docs in NOLA and Charleston are great and have tons of experience! Good luck with your decisions.

Kat - if you are staying at Homewood Suites, there is a Target right behind it so your hubby can easily shop.  Are you anticipating that you will get scheduled for surgery immediately after the consult?

aspinner, I travel a lot and finally decided to stop worrying about forgetting things.  I figured out the sell the same stuff practically anywhere you go! As long as I have my favorite pink hoodie, I'm fine!

We stayed at the Homewood suites and everything was very convenient. There is a Target and a grocery store practically in the parking lot.  My favorite grocery store Publix, is not very far either. There's a Trader Joes as you go into Mt. Pleasant; Walgreens and CVS are close by.  I found out even if I go off and leave a prescription at home, Walgreens has it on file so even thats not a problem.

Drawstring PJs were nice to ride home (FLorida) in.