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Advice on Mastectomy Aftercare

Dot53
Posts: 238
Joined: Nov 2009

I am scheduled for a bilateral mastectomy with reconstruction on Dec 5. Would those of you who have been through this procedure share with me what happens afterward? I do not know what to expect. Will I be in a lot of pain? I don't have anyone to be with me during the day once I get home and to be honest... I'm scared.

Thanks..
Dot

Kim59's picture
Kim59
Posts: 43
Joined: Nov 2009

I had my bilateral mastectomy with expanders on Oct 30. I stayed 1 night in the hospital. I realy wished I would have stayed another night, I guess for the morphine :} I had a lot of discomfort but not unbearable, tight feeling in my chest from the expanders. I had 2 drains which stayed in for 12 days. I went home on Vicodin and a muscle relaxer. Take your pain meds frequently and you will be fine. I did feel better in the recliner, just easier to get up and down. The first week is the hardest. It has been 2 weeks and I feel a lot better.

You will be in my thougths and prayers on Dec 5

Dot53
Posts: 238
Joined: Nov 2009

Kim,

Thanks so much for responding. I sent you a message on one of the other posts but you probably didn't see it. I was hoping to connect with you as this is all new to me too.

Thanks for the prayers too. I think and pray for all the women on this site everyday and when I see some of their posts and what they are going through or have been through I am totally amazed. There are some kind and brave souls on this site... I never knew about it until I spoke to a "navigation service" where I had my scans on Monday. They directed me to the AMC and I am grateful b/c I had no one to talk to that was in a similar situation before that.

Please stay in touch..
Dot

Kim59's picture
Kim59
Posts: 43
Joined: Nov 2009

Dot,

I will keep in touch. This site is so huge how do you know when someone has sent you a message? I have trouble remembering were I have been. I can't believe how much information I have gained in such a short time.

These women are amazing...

Calleen's picture
Calleen
Posts: 414
Joined: Jul 2009

you can see what some of us did go through.. and what to expect. I'm on my way out the door so I can write more later.. Mine was July 29th....

Calleen

Dot53
Posts: 238
Joined: Nov 2009

Kim,

It is hard to remember where you were on the message boards there are so many posts.. I responded to you when you said you were new.. but if you go to the member section it is alphabetical so you can look up a name and maybe you can contact that person directly - not sure though..

I received a letter of instruction from my surgeon today and apparently I have to go get a sentinal node injection the day before the surgery.. do you know what that is for?

Hopefully, it doesn't hurt too much..

Dot

Kim59's picture
Kim59
Posts: 43
Joined: Nov 2009

Sorry, I don't know what sentinal node injection is. Unless it is the dye injected so they can see the nodes in surgery. I had 2 nodes taken out during surgery and they did inject dye to find the nodes. Maybe you can call the place where you will have this done.

Kim

helen e's picture
helen e
Posts: 223
Joined: Sep 2009

I had to have a sentinal node biopsy during m lumpetomy and they injeccted a radioactive die into my breast 4 hours before surgery. This was done to "light up" the nodes so they know which ones are closest to the breast to take out. They then sent me to nuclear medicine and I had to stay in a cat scan type of machine until they could make out my sentinal node and then I went back to wait for surgery. My node lit up in about 1/2 hour, so by the time I got to muclear med. I was in the machine and the first xray showed the node. I'm surprised that they are having you do this the day before. How long does that radioactive die stay in us? Hope this helps.

What type of reconstruction are you having? I am having a TRAM flap reconstrution on Dec. 11 and was told that I will be in hosp. from 4-7 days and out for 4-6 maybe 8 weeks. So I guess the recovery period really depends on what you have done and how fast you heal.

Helen

Dot53
Posts: 238
Joined: Nov 2009

Hi Helen,

I can't remember what type of reconstruction it is but I know it is not a tram flap. I will find out on Monday and let you know.

How wonderful that they are letting you stay in the hospital so long... what state are you in? Here in NY we get a day...not looking forward to going home one day after...

One thing I am a bit confused about is the drains..my doc said they will stay in for 4 days yet I keep reading in all these posts that most have them in for weeks...

I think I could handle it all a bit better if I had more time to recover from my reduction surgery.. its 7 weeks today and I am just beginning to feel more like my old self...

Thanks for responding; it is so comforting to speak to others who are so supportive..

Dot

helen e's picture
helen e
Posts: 223
Joined: Sep 2009

I teach in central NY and we have our 8 different districts in the BOCES system and we have really good insurance - 100% hospitalization - but it's not the insurance. The TRAM surgery takes tissue and a muscle from my stomach (I will have a tummy tuck) for reconstruction. This apparently is major surgery, that's why I have to be in so long. I will be out of work anywhere from 4-8 weeks. Thank God for insurance. I hope your surgery goes well!

sherria49's picture
sherria49
Posts: 126
Joined: Sep 2009

I too, had my bilateral mastectomy w/reconstruction on Oct 30th, and spent only 1 night in the hospital. I was expecting alot of pain, but it was manageable. I would suggest having nice comfy button up pj's, nothing over your head due to range of motion in your arms, and pull on pants or sweatpants. I also set up a small snack tray, so that I wouldn't have to keep getting up & down. Extra pillows for under your arms to help keep them elevated. My chest felt like there was a set of encylcopedias sitting on them, the drains were more of a pain. You may need some help draining them for a few days. I still have 1 drain in, and I'm able to drain it myself now.

This is a scary process, but please remember, there are many, many veterans/warriors here to help you through this time. These ladies are so supportive. This is the best place to come for advice, support, questions, prayers, and just plain kindness.

Please keep us posted and come here to ask for help.

Best wishes & big warm hugzzzzz ~ Sherri

Dot53
Posts: 238
Joined: Nov 2009

Thanks for your kind words of encouragement... You are so right.. this is a very scary process... those that have not gone through it keep saying how brave I am.. how little they know... I'm not brave, just in shock and denial...

Dot

tommaseena's picture
tommaseena
Posts: 1771
Joined: Feb 2009

Dot,
I had a bilateral mastectomy w/tissue expanders put in on 2/2/09. I was discharged on 2/4/09. I can not take morphine so I was given something else. I only needed to take 1 pain pill (Percocet) on 2/5.
I had two drains in and drained them myself. My drains were in for about 1 week. The drains stay in depending on how much drainage you have--if little drainage then they come out sooner--more drainage then they stay in longer. You don't want fluid to build up so this is why the drains are there.
Sentinal node injection--Mine was done the morning of my surgery where they inject dye into the breast so your nodes light up.

It is a very scary process but with help from family and friends and sister in pink you can get through this.

I just had my tissue expanders taken out on Tuesday and silicone implants put in - this was day surgery. Very little pain from the surgery--more pain from where the tape was and felt like layers of skin came off.

I took a month off from work after the double mastectomy and took a week off after this past surgery. I will be back to work on Monday. I was driving on Thursday-doing some wash on Wednesday and walked in a Veterans Day parade with my son.

I have a 6 year old son who helps me do some things.

I will be thinking and praying for you.

Hugs,
Margo

Dot53
Posts: 238
Joined: Nov 2009

Hi Margo,

Thanks for all the info..you sound like me going back to work so soon after having a major surgery. I had my breast reduction on Friday,Sept 25 and went back to work the following Thursday.. I probably push myself too hard but don't want to be a baby either. I have too many people depending on me here..

I keep wondering why they are doing the sentinal thing on the friday before the surgery. I am going to call on monday to ask.

Also, just wondering, do they tell you after they do the scans if they see any other cancer or do you have to wait for the doctor to tell you?

Again, thank you for responding.. I was beginning to feel a bit lost in the crowd here..

Dot

tommaseena's picture
tommaseena
Posts: 1771
Joined: Feb 2009

The techs or other doctors don't tell you. Your surgeon tells you what he thinks it might be but then wait for the final path report to verify.

Margo

e_hope's picture
e_hope
Posts: 371
Joined: Sep 2009

first what kind of mastectomy are you having?

I had a double mastectomy with expanders...

My experience... I was in hosp for 23 hours...
(honestly the first 12 hours is the worst pain ever)

I came home with 2 drains one on each side. (which I took care of myself)
My drains were in a total of 14 days
* I would wear sweat pants with pocket and put my drains in
the pockets, They will tell you not to do this for fear you might
rip the drains out... but YOU WON'T FORGET THEY ARE THERE
**FOR ME.. the drains were the worst part it.. they are VERY unfortable
and its was very hard to sleep with them.
I was surgically glued back together so I didn't have incisions to care for
The pain is going to be there but with the use of the pain med was easily managed
(in the beginning take the meds regularly)
You will have a lot of pressure and tightness
esp when they start filling the expanders
(my plastic surgeon starting filling mine 1 week after surgery)
(and I had weekly fills till size I wanted, for 6 weeks)
You won't be able to put your arms over your head...
so before anyone leaves you make sure anything you need is low enough to reach.
You can't do any lifting... I have 3 small kids...
(so I had someone at the house at all times to help care for them)
You will be tired, so rest when you need to
If your getting lymph nodes out, you should get a small mastectomy pillow
it goes btw arm and body to help with the tenderness and discomfort when you sleep
*honestly, I cant remember who sent it to me.. I thing breast services*
where I had my mammogram at...
(if you cant find one I can get you the measurements and you could make your own
its just a little fabric pillow, just PM me)

You can managed with some pre-planning...
1 easy meals
2 have things you need low to reach
3 have either water bottles, or what ever you drink accessable bc you won't be able
to lift heavy things (ie. gallon milks)
4. and just rest.. its what your body needs
5. the pain meds will make you constipated so be prepared !!!!!

Hope this helps...
Good luck to you

e_hope's picture
e_hope
Posts: 371
Joined: Sep 2009

sorry double post

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