Unsettling Appt.w/Surgical Oncologist

3coolkidsmom-2007Jan05

Today I saw the surgical oncologist my plastic surgeon recommended. (am having PBMs with DIEP reconstruction for LCIS July 23)He spent A LOT of time talking about the risk for a cancer diagnosis following prophalactic mastectomy. He estimated this risk to be as high as 5% because of the breast cells he may not be able to remove during the surgery. When I asked about nipple-sparing, he said he had never done the procedure before but would ask around and would consider doing it during my surgery. He said he understood my desire for a nipple sparing procedure because I would be able to retain all of the feeling in my nipple with this procedure.( I have never heard of anyone retaining all of the feeling in the nipple, even with nipple sparing.)

I really liked the surgeon, but he didn't instill a lot of confidence. On the way home, I kind of freaked out. I am left feeling like I need to cancel my surgery and start all over finding new surgeons. Is this just me being scared, or an instinct I need to act on? Help!!!!
Amy H

Anonymous

amy---if you want a specific technique performed during your surgery, I would recommend finding a surgeon that has expertise with that technique. (I know somebody has got to be their first case, but do you really want to be their first???) He's correct in that the risk of bc cannot be totally eliminated with BPMs, since they cannot guarantee all the breast tissue will be removed. Did he mention the possibility of tamoxifen afterwards? (reportedly offers up to a 50% reduction in risk---but would that 2.5% difference be worth the possible SEs?) A lot to think about certainly; these are definitely difficult decisions.

Anne18

Amy:

I definitely think you should go for a second opinion. I know it's overwhelming to feel you are "starting all over finding new surgeons"... just don't feel rushed into making such a major decision. You need to be comfortable with your surgeon.. Listen to your inner voice... Sometimes it takes one, two or three opinions...

Good Luck and God Bless...

Anne

leaf

I agree with both awb and Anne18. This is not emergency surgery (though I can understand if you feel that way.)

I agree that other opinions may be in order.

The only way a doctor gains proficiency in an operation is by doing it over, and over, and over. I think that many people recommend in a surgery as complex as breast reconstruction, they want them to have done the operation like over a hundred times.

Whether or not you feel comfortable with this surgeon, you can always gain another point of view from another surgeon, and perhaps find options you didn't know you had before.

As Anne said, don't feel rushed going into this. Wait until you are sure the risks and benefits are where you want them to be.

Catherine

Definitely get a second opinion. You don't want to be the "guinea pig" for this surgeon. Go with someone who has lots of experience with the reconstruction you want.

Catherine

Anonymous

amy---I know how difficult it is to think about cancelling a surgery (after all the planning and the emotional build-up that goes with it), but please remember that LCIS is not an emergency since it is non-invasive. So you can take all the time you need to get as many opinions as you want and don't need to feel rushed in any way.

bisous3

I am BRCA 2+ and did tons of research before my prophylactic mastectomy with reconstruction. I live in Florida and traveled to White Plains, New York for the surgery because I found the doctor who was most experienced in nipple and skin sparing mastectomy (he and his father, also a breast surgeon and former chief of breast services at Sloan Kettering in NY who pioneered this type of mastectomy.....and they have never had a patient develop a cancer in 37 years), plus he was working with a plastic surgeon who did immediate placement of implants using Alloderm (no expanders) making it a one step surgery. I am 4 weeks post op and feel great, not to mention my breasts look like they did when I was 19!!

The most important thing for me was the surgeon who was doing the mastectomy portion of the surgery needed to be experienced.....leave too much tissue and I could develop a cancer, take too much and I could lose my nipple.

Take your time......and the right decision will come to you.

moogie

I agree with most of these ladies: You need another opinion preferably with someone who has done LOTS of this kind of surgery. It is true that even with the best surgeon one bad cell may create cancer in the remaining tissue....but there is no other treatment we have to dramatically lower risk than a mastectomy. ANd coupled with hormone therapy , perhaps you would feel more confident moving forward.
This is all hard, but when I had a very upsetting dr's appointment with a highly skilled surgeon,,,a big-whig at a nationally known cancer center....I was completely devastated. I left his office thinking: If a few minutes in consult with this guy has my teeth rattling....how can I see him for a solid year or more? What if I have complications and he is the person I must turn to ?? I saw 3 surgeons and picked one who was highly skilled, and had a more normal human approach to patient care. AND, I have communicated with several other women, who had the exact poor experience I did with the upsetting DR....so I know now it wasn't me.

LCIS is not a 4 alarm fire. Take your time. Read a lot of books, do research , and get another surgeon 's approach. Reconstruction takes time...and you don't want some guy who freaks you out expanding you for 6 to 8 months!!!
Moogie

veggievet

Hi Amy,
You might also want to visit the website for the organization FORCE: Facing Our Risk of Cancer Empowered. FORCE is an organization devoted to hereditary breast and ovarian cancer but many of the women on the message boards there have faced similar decisions. Many have chosen nipple-sparing surgery which could be appropriate under certain circumstances but you certainly don't want to be the first patient that your breast surgeon tries this on. There is a protocol that should be followed for nipple-sparing surgery which involves removing some of the nipple/areola to check for cancer cells during the procedure.

I know that the idea of residual risk for breast cancer after mastectomy is scary but it's really really low and much lower than the risk you start with going into surgery.

I think no matter how much you love the surgeon it is appropriate to get a second and even third opinion. There is a also a great book called The Breast Reconstruction Guidebook that also have great information on nipple-sparing surgery. It's an easy read too.

I would be happy to get you in touch with women who went the nipple-sparing route, as I know many personally. It wasn't the route I went but I had my mastectomies 10 years ago.

You can e-mail me at: sueanddan@att.net

if you'd like to chat.

Warm regards,
Sue

CaliforniaKate

Amy, would you consider getting into a plane with a person who has never flown, but would ask around, and then give it a try. Never be the first patient to have a new procedure. I was really suprised by his comment. He may be a brillant surgeon, but if he doesn't do the procedure you want, look around. Wishing you the best. Kate

3coolkidsmom-2007Jan05

Thank you all for your great advice. I called my plastic surgeon's office and spoke with the nurse about my concerns and she will speak to my surgeon and get back to me. Many of you write that I should get a second opinion, but I can't find a sugeon in Dallas who is experienced with nipple-sparing. I have spoken with my insurance co about traveling for the surgery, but the out of network fee would be unbelievable.

I have practically memorized the Breast Reconstruction Guide and Kathy Stilego, the author, is the one who gave me the name of my plastic surgeon.

I guess for now, I will proceed with caution trying to figure all this stuff out.
Thanks again,
Amy

LisaAlissa

Amy, I don't live in Texas and haven't needed to do reconstruction, but you might want to take a look at a website about microsurgical reconstruction techniques. Lots of interesting info on there, but on their "doctor's page" they also list (at the bottom) other doctors that use the microsurgical techniques they do. They list one in Houston and one in Dallas. You might want to check with those doctor's offices for referrals to breast surgeons who do nipple sparing surgery.

Good luck!

LisaAlissa

etc: link

Traci-----TripNeg

NYFL,
I wish I would have read your post before I had my surgery.
I went onto that FORCE website and they have quite a few photos of mastectomy patients. Not one of them....not one...had the scars I have.
My scars go from just below the middle of my arm pit to almost the center of my chest.
Loose fitting tank tops or halter tops are a thing of the past for me...unless I want people looking at my scars, which they already have.
Most of the pics on that site...the girls have scars straight across that appear to be 3-4 inches long.
God how I wish I had that knowledge before.
Traci

Chelee

Traci, I went to the FORCE site and I can't find the pictures you looked at of the women with mastectomies? I know its there...but I will look harder later. But for now from your description of your mastectomy scars...that is EXACTLY how mine are...both sides.

I wanted to see what your talking about because NOT only does my scars start from my arm pit to the center of my chest...but right where the scar ENDS at the center of my chest I have these TWO LITTLE *tit* like fat pads. Hard to explain...but they sure DON'T look like their suppose to be there! I've looked at other sites with mastectomies...and I can't find any pictures that have what I do? It looks like two little tits sitting side by side. Each one is a little part of the breast from each side that was left and I don't understand it? I've asked my surgeon and he says thats just the way it is. He blows it off. But when I where a bra I find it annoying plus it looks STUPID. Anyway...your NOT the only one with scars from the arm pits to the mid stomach. (Maybe we have the same surgeon.) lol Like you...I WISH I would of read ALOT more before I let anyone touch me!

Chelee

Kitty_Cat

I also have a scar from under my armpit to nearly center of chest. If I wore sleeveless the armpit scar would show.

About an inch and half below chest scar - (closer to side then the center) - I have a puffy puff soft bump as well.

I asked my onc about it and he pushed on it (it's very soft) and said "I don't know, must be some tissue of some kind."

I saw the surgeon aprox a year after the surgery and asked him what it was and he said 'I don't know.' I was shocked to hear that from the surgeon who performed the surgery.

Then he really worried me when he said 'it could be breast tissue. You can't get it all out.' He then said that breast tissue takes up nearly the whole chest and underarm area and even into back.

I plan to force myself to have reconstruction this year and will ask the ps about this. And ask him to remove it before he implants the fat tissue. (DIEP) Hopefully he can do that - don't like having a puffy bump of breast tissue!

LittleG

Amy,

Go with your gut feeling. You're probably right.

LisaAlissa

Chelee and Kitty Kat,

Sounds like you may be describing what I've heard referred to as "dog ears." You'll find a number of discussions of them if you search "dog ear" using the search facility in the purple box at the top of the page.

It appears to have something to do w/ how the surgeon sews uneven edges together...and sounds as if it is something that can be "revised" by a ps.

Good luck!

LisaAlissa

Traci-----TripNeg

Well girls, I'm sorry to hear that y'all have the same scars but happy to know that it wasn't just my surgeon.
Chelee, I have those little *tits* lol....too and yes, my ps told me that those will go away when he puts my implants in.
I took a picture of my scars if you want to see. Oh yea, did I tell you the scars were crooked too?!
Send me a regular email if you want me to send you the pic. I don't know if you can do it on here...or how if you can. My email is: traci@oceanliferealty.com.
Hope you have a goood day.
: ) Traci

Chelee

Traci, Your the first person that told me they have those little *tits* too after mastectomy. I was really beginning to think I was the ONLY one. I hate mine. At first I was told it was fluid in there and in time they would go away. Its been 1 yr and 7 months..and its still just as bi.

My scars seem pretty straight...but i just don't like the left over tits. lol Seems like my surgeon should of drawn a circle around my boobs BEFORE the surgery to make sure he got my entire breast. My right *tit* is bigger then the left one. I had both mastectomies at different times so they don't even match. O'well... I have the smallest pair of un-even tits around...maybe I ought to call the genis book of world records. haha

Yea..if you have pic's that might be interesting to see if its like mine? I should take some pic's of mine. I think I will. Thanks so much for letting me know you have them too..I was really beginning to wonder. I'm glad your surgeon let you know those will be gone once you have your implants. I will send you a private message with my email in case you don't see this. Thanks again.

Chelee

Anonymous

Amy--wondering if you had your surgery on the 23rd and how you're doing. Praying for a speedy recovery for you.

leaf

Wishing you well, and sending you healing thoughts, Amy.

Kitwe

I hope all the surgery issues are in the past. I was recently diagnosed with LCIS. I am taking Tamoxifin. I was hoping you can explain to me your decision to have a masectomy. I am so unsure of what to do. Thanx

amythol

Dear Suze,

I was diagnosed with LCIS in January(when I had a 3cm mass removed) and I also had atypical lobular hyperplasia. My decision to have bilateral mastectomies evolved over several months. I was all over this board and others asking a million questions and I went to several appointments with an breast oncologist, three different breast surgeons and two plastic surgeons. I don't think my choice was the popular choice, and certainly not an easy one.

I started on Tamoxifen in February and had debilitating migraines about four times a week. I also had a breast MRI and another lump in the next few months.

One of my closest friends died from breast cancer two years ago and I was definately affected by all that she went through. I also have three children who are very medically fragile. (they have a rare and terminal genetic syndrome)

For me, I needed to feel like I had done everything possible to be there to take care of my kids. When I asked women with breast cancer what they would do in my situation, almost all of them responded that they would have done anything to prevent going through chemo. One told me that being diagnosed with a precancerous condition was a gift and opportunity to prevent breast cancer.

I will be thinking of you as you travel this bumpy road,

Amy

veggievet

Hi Traci,
Would you consider sending me your photos and letting me post them (cropped and unidentified) on the FORCE site?  No pressure but if you'd like to share you can e-mail them to me at:

 suefriedman@facingourrisk.org

 Warmest regards,

Sue