Mastectomy + Reconstructive Surgery recovery

[noelwr]

some of you who know me from the Pregnancy thread know that I was diagnosed with breast cancer during my 8th month of pregnancy (November). I had a lumpectomy. after a visit to cancer-specialized hospital for a 2nd opinion, I am going to have a mastectomy, removal of some axillary nodes and reconstructive surgery (implant, not expanding) all in one operation some time in January.

I am not looking for well-wishes or prayers, just strictly for information regarding recovery for such surgery. I hope no one answers as I would hope none of you have had to go through this, but if you have or know someone who has, I'd like to know about the recovery.

I'll be in the hospital 3-4 days. I understand that the pain from the mastectomy isn't so bad, but the pain from the reconstructive surgery is as they need to cut away muscle tissue from the bone to insert the implant. I will be on pain killers via IV for the 2 days after. apparently I am not allowed to lift my arm on the side of surgery for 3 weeks and not pick up anything heavier than a liter of milk for 6. what is it like to have a drain in your "new" breast and did it hurt to have it removed? what does the skin feel like? anyone have experience with having the areola/nipple tattoped later on?

thanks in advance

 

[Hudson_Hawk]

Hey Noel,
((Hugs)), I'm sorry to hear about this latest development. In 2001 my mother was diagnosed with BC and had to have a double mastectomy and node removal done. She was in her early 50s at the time. She chose to wait on the reconstructive surgery and actually just had it about a month or two ago.

A few things I know she's struggled with with the surgeries. She had a lot of neuropathy around the incision sites and under her arms, which was an annoyance. It was like a numb sort of irritating pain, if that makes sense. The drains were never an issue and were relatively easy to manage. She developed lymph edema in one of her arms/shoulder/neck several years after the surgery, which has been difficult for her. With the reconstruction, she had to have expanders inserted and then the implants, so I guess she had 2 surgeries to get to the final outcome. She had no issues with the healing process or the drains and is happy with the outcome. She has, however, had a lot of issues with the antibiotics they put her on and she's developed a bad case of vertigo (not sure where it came from or what it's from). She has not yet had the nipple tattooing done and I don't believe she has much, if any feeling in her breasts.

Hope that helps, my best advice is to read up on the side effects and how to prevent them (if possible).

 

[FrekeChild]

Well. I haven't had breast cancer, but I did watch as my mom went through a double mastectomy. Two years later I went through a breast reduction. So I know nothing about the reconstruction part (my mom decided against it) but I know a lot about surgery in the breast area.

I can tell you a couple things about breast surgery from my experience.

You will be on your back for at least a week, probably more like two. Whatever you do, move around, sit up, walk around, stand, whatever you can to relieve some of that pressure off of your back when you can. I am a side/belly sleeper and I would wake up or just not sleep because my back hurt so bad after lying on it for about 3-4 days straight. If you roll over on your side, it pulls the incision and you obviously won't be able to sleep on your stomach.

Another item is that you will lose feeling in parts of your breast. It is very disconcerting to see and KNOW my (or someone else's) hand is touching my breast, but I cannot feel it. Of course it's an entirely different surgery, and I hope that you don't experience this, but I know that nerves are tricky things and they recover on their own time.

I am guessing that you are not afraid of scarring, so that is great, but there will be some, and it will be scary looking, at least at first.

I know that my mom was absolutely terrified of somehow losing her femininity with her breasts. My dad told her "Boobs don't make a woman."

That line still makes me tear up.

Let me know if you have any questions.

 

[somethingshiny]

I don't know anything about reconstruction, but I can share the experiences of my grandma after mastectomy.

I believe she was 56 at the time. My mom stayed with her for 3 weeks after surgery. Lifting her arm was the most difficult and painful part. My mom encouraged her to take the pain meds every 4 hrs even if she was feeling okay at that moment so the pain would stay controlled. She said the skin felt funny because it wasn't where it should be. Since you'll be having reconstruction, I would imagine you wouldn't have that odd sensation. She never regretted having the mastectomy.

A friend had a reduction and had the same recovery time as my grandma-3 weeks rough recovery, 6 weeks total, about 3-4 months until it felt right. Again it was the raising arms that caused the most pain.

DH's aunt had breast cancer and chose a reduction along with radiation. Her recovery was the same as above but with the added fatigue of fighting the cancer, her total recovery stretched to a year. She is currently in remission!


As far as tattooing, fatty areas hurt far less than muscley areas. Do lots of research for a good artist, maybe you could get recommendations from your surgeon. Wait for all the initial swelling to subside for proper placement. Ask about doing it in multiple sessions to add the colors in layers. We fair skinned girls have a tendency of blow-out with dark colors. If you heal between sessions, the resulting scar tissue will give it some strength in keeping the shape.
If you're really trying to look as natural as possible, there are devices or forms that can be placed under the skin, don't know if they have them for the nipple area, but you could check.

I wish you the best outcome, Noel. Skye is so lucky to have you for her mama.

 

[Beacon]

Hi Noel,

Good luck with your upcoming surgery. What I can say is that the result is different for every woman - sometimes pain is minimal, sometimes significant. It sounds like you are having "gummy bear" implants? Meaning no tissue expander, just right to implants at the time of surgery? that is a newer technique. Most women have tissue expanders placed which are subsequently filled over time and then exchanged for implants. I recommend the website www.breastcancer.org - the forum there is amazing, these ladies are really expert and they know all about it. You can ask anything and someone will have had it done. Good luck and be well!

 

[Smores84]

what is it like to have a drain in your "new" breast and did it hurt to have it removed?
Most people say the drain is annoying because it gets in the way when you move around and you have to pin it to your clothing/bra with a safety pin. When it is removed, it is usually a very mild and brief pulling sensation lasting a couple of seconds.
what does the skin feel like?
You may have very slightly decreased sensation in the skin around the incision site. Experiencing pain and paresthesias is possible, but your health care providers will work with you to make sure those issues are addressed if they do come up.
anyone have experience with having the areola/nipple tattoped later on?
The tattooing process is a simple and quick outpatient procedure. Some surgeons give local anesthetic in the skin before tattooing and most patients have decreased sensation in the skin from the surgery anyways. Immediately after the procedure, the tattooed area will be red and the color will appear more intense. But it will look much better after the redness decreases over the next days-weeks.

I wish you the best and a speedy recovery!

 

[Indylady]

My mother had a single mastectomy after she was diagnosed with breast cancer when I was a kid. One thing that I remember was really useful is that she bought a night-dress with pockets, and the pouch that drained fluids stayed in the pocket so she wouldn't have to carry it. I wish I could add more, but it seems like anything else I would have said has been covered. Lots of love and healing dust to you Noel!

 

[noelwr]

like I said before, I wish you all wouldn't have to know women who went through this, but I do appreciate all the feedback. thanks very much.

 

[Munchkin]

First, I am SO sorry you've gone though this. The most amazing blog I know is: http://marathonb4mastectomy.wordpress.com
Liza is an incredible inspiration and truly wonderful person. Her blog has very frank accounts of the physical struggle of mastectomy/reconstruction as well as the emotional toll it takes. She tells it like it is. Knowing her, I'd imagine she'd happily respond to any personal questions you have.

Good luck and good health!

 

[Beacon]

Noel, Just a couple comments on some of your specific questions: Don't worry at all about the drains. They are weird, but they will not hurt you unless you catch them on something. They'll be gone in a jiffy and removal stings only for a brief moment. No big deal.

Your reconstructed breast will likely be quite numb over a wide area and may stay this way always. From my talks with ladies who had recon, the numbness is not bothersome, not like a foot "falling asleep" pins and needles thing, just absence of feeling. Odd, but not trouble.

Make sure your surgeons are the best in their field. You don't get a rewind button with this and you need to make sure they know what they are doing. Read up on what can go wrong. Then ask your surgeons about complications and ask them "in your clinical experience, how often has XX happened". Otherwise they might quote statistics but really, you don't care about statistics, you care about what your surgeon is seeing in their practice. The importance of a superb surgeon cannot be overstressed. I was lucky not to have cancer but spent ages in a major cancer center being diagnosed. Spent a lot of time with a lot of patients and learned much along the way! I did have two breast surgeries and zero pain, zero, zero pain, thanks to the excellent surgeon.

Also, ask them to give you a BRCA 1,2 test (simple blood test). You'll need to talk to someone in cancer genetics to get it approved. You are young for cancer and should investigate this test. Good luck and hang in there!

 

[noelwr]

thanks Beacon. my oncology surgeon is apparently the guru on breast cancer in my country. regarding the plastic surgeon, I don't know which one I get on the day of surgery, but the one who explained the procedure is the only male in a team of women. he did go over the things that could go "wrong", the likelihood and what it would mean for subsequent actions (more surgery). he also said that if I still have questions to make another appointment before the surgery and he or one of his colleagues will be happy to go over all of it again with me. like you, he said better to know before than after when it's too late. plus he doesn't want me to have a million questions on the day of surgery because that means I am not comfortable and he doesn't want me to go in anxious.

yes, I'm having the implant right away because my "new" breast will be significantly smaller, plus the oncologist thinks it is unlikely I will need radiation. the healthy breast is quite a bit smaller than the one that will be removed so I asked the surgeon to please make them even (which I guess is pro amidst all the cons) and that is why no expanding is necessary. which also saves me another surgery.

the oncology surgeon said there isn't much pain from his part of the surgery as he will also have local anesthesia administered so that the brain doesn't receive pain signals. however, the plastic surgeon said there will be pain as they have to cut away the muscle from the bone to place the implant under the muscle. I will get pain relievers via the IV the 2 days following the surgery. everyone has said I must be honest if I'm in pain. better to suppress it before it starts as it takes longer if I wait for the pain to start. not sure if you also had implants.

and that's fantastic news that it didn't end up being cancer. what an emotional roller coaster that must have been for you.

also thanks for the website Munchkin. I will certainly have a read.