Racing Against BRCA: Bonus Clip #6 - Surgery Options
Surgery Options
This blog post is CHOCK FULL of great info! I really wish I had this information when I was preparing for my surgery. I interviewed two amazing women on their journey's with their reconstruction, who also happen to be my aunts! My one aunt is my mom's sister, Patty Dougherty, has the BRCA 2 gene and was diagnosed 9 years ago with breast cancer. The type of reconstruction she had was expanders. My other aunt, Carol Gallo, is my father's sister and was diagnosed with breast cancer the day before my surgery in December 2016 and she decided to do diep flap as reconstruction.
I will also answer the questions you all submitted to me about my surgery/reconstruction, which was straight to implant and any additional questions that I remember having before my surgery.
Get comfy, because there's A LOT of info and as always, let me know if you have any additional questions!
Expanders (Patty):
Was there anything specific you had to do before the surgery to prepare for it?
P: Preparing for reconstructive surgery was the easy part. I looked forward to getting this last step over with, well almost the last step. I still would need to have a nipple created and an areola tattooed. Having the mastectomy and weekly fills was much more difficult both mentally and physically. Try and get as healthy as you can, both mentally and physically. You have to be realistic about the outcome.They will not feel like your real breasts, but on the flip side, your breasts can still look beautiful and for me, it helped me feel like a women again. (My surgery was almost 9 years ago and my breasts are as perky as ever!)
Who is a good candidate for this type of reconstructive surgery?
P: A good candidate for this surgery, is someone who is having their nipples removed and doesn't have any spare skin and the expander will stretch their skin. Another good candidate for this surgery, is someone who wants to go larger than their current size or someone who doesn't have good circulation to their nipple.
The type of person that is a good candidate for this surgery is someone who wants to go larger in size than their natural breast or if they don't have good circulation to their nipple (your surgeon can determine this during surgery or before).
Who isn't a good candidate?
P: Someone who isn't a good candidate, is someone who doesn't want to go for fills every week and to have a second surgery.
What are the scars like
P: Mine were not very pretty at first. Thankfully, they have faded over the years. Nothing happens as quickly as you want it to with this whole procedure.
What are the specific risks associated with this surgery?
P: The specific risks associated with this surgery are tissue breakdown if the expander is filled too much (or) capsular contracture which is when internal scar tissue forms a tight or constricting capsule around a breast implant, contracting it until it becomes misshapen and hard. Skin necrosis is also possible, which is when the tissue dies from either infection or not enough blood flow.
What were the pros and cons to this surgery?
P: The pros are, you can choose how big you want to be and see how each size looks as you go for fills and also the surgery is shorter rather than going straight to implant or diep flap. The cons are, going for the fills, because they are painful and having to do a swap surgery (going from expanders to implants).
I have never once regretted having reconstruction. For me, having breasts was very important. I didn't want to put pads in my bras or bathing suits. This may be a great solution for someone who doesn't want to have anymore surgery, I completely understand.
How long does this surgery typically take?
P: It's been so long, I really don't know for sure. I'm guessing maybe between 1 to 2 hours.
How do your breasts feel and look when you had your expanders in versus now?
P: They seem more natural than the expanders and a little bit heavier and harder.
How many fills did you get and how often? Did it hurt? How did they fill the implant?
P: I would get my fills weekly. Getting the fill didn't hurt because your breasts are numb from the mastectomy. You must be very careful not to fill them too much because you want to move the process along a little faster. This can be very painful. If this does happen, the Dr. can take some of the saline out.
They implanted a "port" during the mastectomy surgery, so when you go for your fills they would find the port (I think it was like a magnet?) and they would use a needle and fill the expander with saline. The plastic surgeon will determine how many cc's you get. The ports are removed after the surgery.
How long did you wait until you did your swap?
P: I started having the expanders filled as soon as I healed from the mastectomy. The entire process took 7 months.
When you did your swap, did it hurt? How long was the recovery? Was the procedure extensive?
P: I had the mastectomy in April and the swap in November. It was pretty easy, nothing like the mastectomy. I hosted a Thanksgiving Dinner the following week, with LOTS of help. I wouldn't recommend this but I wanted to let you know that it's not that bad. Surgery without drains is a happy surgery!
What implant did you choose and why? Are you happy with your choice?
P: I choose the "Gummy bear" implants, really that is what they call them. They are a cohesive gel implant. I was in a trial study and my surgeon was really so impressed with these implants, he asked me if I would consider.
They are a cohesive gel so if you cut them apart there wouldn't be any leakage and I felt that they would be safer.
Do you have any feeling in your breasts?
P: No, not really. Over the years, I have had some feeling return, but not much. I also had my nipples removed, so that makes it even more numb.
Do you recommend this option for someone who is an appropriate candidate?
P: Yes, I do. I really liked that you can see the different sizes during the fills and make little tweaks here and there.
Diep Flap (Carol):
Was there anything specific you had to do before the surgery to prepare for it?
C: Although I had many consultations with the breast surgeon I needed to have several blood tests, a body scan to see if the cancer was anyplace other than the breasts, a MRI of my breasts, and a chest x-ray.
I had a consultation visit with the plastic surgeon. The plastic surgeon had photos of what I might expect post-op. This was helpful to mentally prepare.
For the most part the prep for this surgery was typical: No anticoagulant medications, including aspirin, for several days; nothing to eat or drink from midnight before surgery.
The only thing that was specific was to do a special body scrub twice a day for 3 days before and the morning of the surgery.
Who is a good candidate for this type of reconstructive surgery?
C: There are several considerations for this type of reconstructive surgery: Good fatty tissue on the abdomen (buttock can also be used, but less common); healthy skin and no scar tissue on the abdomen; people who might have issues with rejection of implant materials; someone who can withstand the longer recovery time; and at least according to my surgeons, women around my age (late 50s).
Who isn't a good candidate?
C: As in the previous question, this type of reconstruction surgery is: someone with unhealthy abdominal fatty tissue or very little fatty tissue (very thin person); someone who has or had cancer in the abdominal area, such as ovarian, colon, uterine, stomach, and other cancers; someone with scar tissue or other problems on the abdominal skin; someone with any ostomies or stomas on the abdomen; someone who may not be able withstand the longer recovery time and the additional surgical incision on the abdomen.
What are the scars like?
C: Ugly! I have a large circle on each breast where the nipple was. I was told by one of my home care nurses that those will fade away. There are long scars at the base of each breast (what is referred to as the flaps). My right breast had some healing issues, so I have some extra scaring and creasing on that side. My abdomen had a very long scar almost from hip to hip and a small dimple that I think of as my fake belly button.
What are the specific risks associated with this surgery?
C: There is an increased risk of infection due to the additional surgical site and additional drains. I had 5 drains: 2 on one breast, 1 on other breast, and one on each side of my abdomen. There is a small scar where each drain was.
What was the recovery time like? Do you think this surgery takes longer to recover from versus straight to implant and expanders?
C: The recovery time was supposed to take 6 to 8 weeks, yes longer than straight to implant and expanders. My recovery time was almost double the expected time. This was for several reasons: drains continued to put out much more drainage than typical; one drain got blocked even though we were properly “stripping” the tubing; and my right breast flap opened in 2 places and had tunneling or a communication between the 2 open areas. This took at least another 4 or more weeks to heal.
What were the pros to this surgery?
C: This surgery uses your own body tissue, therefore no risk of rejection. Once you have recovered there is nothing more to do. I was told with the implant and expanders you had to return to have them expanded over a period of time and that some need to be replaced every 10 years.
What were the cons?
C: Much longer recovery.
Are you happy with your choice?
C: Yes.
How long does this surgery typically take?
C: Several hours.
What is the aftercare like?
C: Immediately after, I was in the hospital for 5 days. I had home care: nursing, physical therapy, and occupational therapy. I had to have others help strip the drain tubing 3 times a day. I was not allowed to or had the strength to lift more than a gallon of milk. I had lots of bandage changes and shower at least twice a day. I had a lot of pain and difficult to get comfortable to sleep.
Did you have drains in your stomach?
C: Not in my stomach. There was one drain on each side of abdomen near my hips.
How do your breasts feel and look? Are they natural looking?
C: My breasts sometimes feel normal and sometimes like a band is wrapped around my chest. Plastic surgeon said this was a common feeling for this surgery. The breasts look normal with clothing. The missing nipple and scars look odd in the nude.
Since they are replacing your breasts w/ fat from your stomach, what happens if you lose weight?
C: I have lost some weight and the breast size has not changed.
Do you recommend this option for someone who is an appropriate candidate?
C: Yes
Any additional information you would like to add?
C: There were other factors that I needed and still need to consider due to the type of cancer I had. I needed chemotherapy. In many cases chemo is done after the mastectomy. Due to surgeons’ schedules my chemo was done before the surgery. If someone needs chemo and have a choice, then do it before the surgery. I don’t think I could have gone through chemo after surgery. It was difficult enough before the surgery.
My cancer was HER 2 positive. That means the tumors were feed on and grow with estrogen. To prevent reoccurrence of the cancer I need to take an anti-estrogen medication for the next 5 years. This medication has many side-effects. The first one prescribed gave me wicked hot flashes and extreme joint pain. I am on a different one and it seems to be better. There are other side-effects to watch for such as blood clots.
No matter the type of cancer or surgery it is important to have a good support system. I am so thankful I have my husband Joe! Carol Jean [daughter] just happened to come live with us just before I was diagnosed. Paul [son] shaved my head when my hair started to fall out. Chris [son] stayed with Joe and was at my bedside when I woke up in recovery. I could not have done or coped with any of this without the love and support of my family.
Direct to Implant (Caroline):
Was there anything specific you had to do before the surgery to prepare for it?
I met with my plastic surgeon to discuss the implant shape, size and consistency of the implant. I chose a bigger size implant if they could do it safely, but if they couldn't, I was happy with the slightly smaller one. My main concern/goal was going directly to implant.
Also, prepare mentally, I tried to visualize what things would feel like and look like before they happened, so it would be a little be less of a shock.
Who is a good candidate for this type of reconstructive surgery?
I really don't know anyone else besides myself who went straight to implant, because the requirements are pretty specific. I had big boobs growing up (like not normal lol) and as I got older they shrunk, so I had a little bit of loose skin. Since I already had "expanded" skin, I didn't really need to expand it more, because I was staying at the same size. I chose a slightly bigger implant with my plastic surgeon, but I gave her permission to use the smaller one if the bigger one didn't work (it was only 10 cc's bigger).
Who isn't a good candidate?
Your plastic surgeon will make this decision for you, but just so you have an idea of what to expect... if you have your nipples removed, you want to go larger than your natural size or you don't have good circulation to your nipple.
During my surgery they put some type of machine over my chest with the implants in to be sure that I had good circulation to my nipple with both sizes of implants. If I didn't, I would have had to have expanders.
What are the scars like?
I have two pretty long scars under each breast, which is the length of each breast and I also have two "dots" on each side where the drains were. I have heard the scars fade a lot over the years.
What are the specific risks associated with this surgery?
There's always a risk of infection with surgery, but the risks specific to this surgery is primarily skin necrosis and tissue breakdown. Since I was going straight to implant, the risk of tissue breakdown and necrosis is higher, because the chest is very tight initially. Also, capsular contracture is possible too.
What are the pros to this surgery?
You don't have to go for fills and you don't need to have a second surgery.
What are the cons?
It's a longer surgery, because they need to test out the implants to be sure they won't cause problems with circulation and the longer you're "under" for the harder the recovery from the anesthesia. You cannot see yourself at different sizes like you would with expanders. It's supposedly a lot more painful than having expanders, but this is subjective, when I woke up I wasn't in excruciating pain.
How long does the surgery usually take?
My surgery took almost 6 hours, but everyone is different. I believe going straight to implant is slightly longer, because they need to do tests to be sure that you have good circulation in your chest. I also had two lymph nodes removed, because they had precancerous cells on them, so I would imagine that took a good chunk of time.
How do your breasts look now?
They look very natural, but I do have a lot of rippling, which I will probably do fat grafting once I can take a week off of running.
How long was the recovery?
I went back to work after a week and a half, which was insane and I would NOT recommend this lol. I know a bunch of people who took a month off of work. I think the hardest part to get better from was the anesthesia. I have very low blood pressure and so pain killers and anesthesia really knock me out. I swear I still have surgery brain. I wasn't able to remember things very well for a few months after, but it got better. I started running after 6 weeks, but then got lymphedema in my left arm from having the two lymph nodes removed. I had to take two more weeks off of running because of it.
How was your range of motion in your arms?
My range of motion was pretty poor at first and I was supposed to do occupational and physical therapy after, but I didn't lol because I am slightly non-complaint. I did do hot yoga and it was amazing for getting my range of motion and strength back in my arms. I do still have a hard time hold big boxes, it's so weird.
What implant did you choose?
I chose the round silicone, because the saline apparently causes a lot more rippling and the gummy bear was so hard and heavy, I felt like with running if I got the gummy bear it would weigh my skin down so much, my boobies would be down to my ankles in a year. My plastic surgeon reassured me that all the choices were safe.
Do you have feeling in your breasts?
A little, but the closer to the scar the less feeling I have. I still have a hard time moisturizing them, because they feel weird to touch and they are numb-ish. FYI have a "bikini buddy" when you go to the beach, because if you have nip slip, you ain't gonna know!
Did you have drains?
Yes, I had drains on both sides and my mom "milked" them for me, which is a huge deal considering she can't even stand taking our dog to the vet haha so I was super proud of her! When you get them out, I'm not going to lie, it feels weird AF and I almost puked. The second side is better, because you know what expect at that point and it's done in 1-2-3.
Do you feel this is a good option for women who are appropriate candidates?
I do! I liked that I just got it over with with one shot, but I am also really lucky that my oncologist and plastic surgeon did a bomb ass job at it. I wanted to choose two surgeons who were meticulous to the max and that they were.
Final thoughts:
If you decide not to have reconstruction, that's ok too! Please choose what you feel most comfortable doing and what makes YOU happy. Remember, our breasts do NOT define us.
All the love,
Caroline