mastectomy

i would like to hear from women who have undergone mastectomies.  i am considering it and would like some input as to the recovery

[BJSaws]

     I had a mastectomy in November 2003. I had my surgery at 10:00 a.m. and went home the next day at about 2:00 p.m. At that point, my pain level was maybe a 6 on the 10 point scale.  Six days after my surgery, my sister-in-law passed away from brain cancer.  My husband and I traveled 500 miles (each way) by car  to attend her funeral with my surgeon's approval.  I was uncomfortable, but was able to tolerate the trip..  Once the drain was removed, I was not even uncomfortable.  I was able to go back to work as a school teacher in 4 weeks.  I chose not to have reconstruction and have worn a breast prosthesis for over 4 years now.  The physical experience was not at all bad.  I did cry a number of times because of the psychological experience.  I had always loved my breasts and felt unattractive when I would look in the mirror, or when my husband would see me naked.  He, however, was wonderful and always made me feel like a complete, desirable woman.  About 10 months after my surgery, my hair had grown back from the chemo and my self-image was back to normal.  For almost four years now, I have not often thought about the missing breast, the bald head I had for 6 months, or the sorrow over the loss of my breast.  I have instead appreciated every day I have to enjoy my husband, children, and grandchildren.  

[peekawho]

I stayed 2 days in the hospital following each mastectomy, and was back to work within 10 days each time.  

[japdip]

Mastectomy one day and home the following day. I had no pain although there was some soreness and stiffness for a week or two. There is always the consideration as to how one feels about losing a breast of course. Some find it very devastating and others value their life much more than a breast. I'm curious if a mastectomy has been recommended in your case. If so then there is nothing to consider ... if you have been given a choice and the surgeon feels a lumpectomy could be done with clean margins obtained then I wouldn't choose the more extensivesurgery. In either case lymphnodes will be sampled and that leads to the possibility of developing lymphedema after surgery and precautions must be taken for the rest of your life. I chose to follow the recommendation of my surgeon and I suggest you do the same. If you have serious doubts you should request a second opinion; my surgeon offered this to me and I would expect any good surgeon to offer the same their patients.

[annintexas]

I had a bilateral in November of last year.  I had little pain.  I did not need the stronger pain meds - I took some Tylenol.  I was sore, but not in pain.   We live in Italy and my cancer was found while visiting the U.S.  I was able to travel home two weeks after my surgery.  I could  not lift my bags, etc., but fortunately, my husband was with me, so he did all the hard work!   Within a few weeks, I was back to my normal energy level and range of motion.   I chose not to have reconstruction, so my recovery period was not as lengthy.  

Good Luck to you!  I hope all goes well.

[frustratedrg]

did you also have reconstruction

[frustratedrg]

i started to tell you my situation in the calcification section.  ive already had a lumptectomy.  right now im dealing only with a biopsy for a cluster of calcs. i have them everywhere and so far all of my calcifications are b9. different ones have been biospsied. im worried in case these arent.  i had a lumptectomy in 2001 with clear margins, chemo (cmf), radiation, tamoxifen and now femara.  i know that if i have a problem in the future, i would only consider mastectomy.

[jenca78]

My stepmom had a bilateral mastectomy two weeks ago, with reconstruction.  She has two bumps now that would equate to an A cup, but she intends to get inflated to a B/C cup.  Her surgery was at 7:30am, and when they wheeled her to her room around 4pm that afternoon, she walked from the gurney to her bed.  She was discharged the following day at 11:00am.  Throughout, she ranked her pain as a 5/6.  The next morning, she woke up at 5am in quite a lot of pain (she ranked it 7 on the scale of 1-10), so we gave her pain meds as well as her usual antibiotics.  She proceeded to get naseaous, which continued for a few hours.  Once we were able to get some food in her, she was fine.  As of this morning, she has now gotten all 4 drains removed, but is experiencing some discoloration on one of her breasts....her plastic surgeon gave her some cream to put on the skin, and is considering putting her in a hyperbaric chamber this weekend.

Overall, she says she does not for a second regret the decision to get the bilateral mastectomy.  She jokes about how she'll have the perkiest breasts now out of all her friends :)

[fletch1119]

I had microcalcifications that ended up being atypia hyperplasia after a stereotactic biopsy.  Risk of cancer was 40% that was reduced to 2% after surgery.  For me the decision was rational not radical.   I opted for a prophylactic mastectomy in May 2007.  I have never regretted my decision.  I had the expanders removed and my implants put in in October 2007.  I just had my nipple reconstruction 2 weeks ago.  I have been more than pleased with my results and can breath easier knowing there will be no more mammograms for me.  I would be happy to answer more questions if you would like.

[frustratedrg]

thank you so much for words of encouragement.  was your surgery very difficult at the beginning?  i had bc in 2001 with a lumptectomy.  ive had numerous calcifications biopsied (approx. 6 clusters since 2001).  this last mammo showed another cluster which i havent decided to biopsy right now or wait the 6 mos.  im exhausted with all of this and i (almost) envy you not having to have anymore mammos.  that seems to be the light at the end of the tunnel (if there is one).  was the atypia the only problem you had before the mastectomy?

[fletch1119]

My surgery was not difficult at all.  Had surgery on a Wed and home on Friday morning.  I was not in much pain - day 1 I took some pain pills but not after that.  The drains they put in are a pain but knew what I was in for - they were out in 1 week and from then on I felt great.  I had a cluster of calcifications biopsied 1 1/2 year prior and they came back negative - and they were tagged.  The new cluster was only my 2nd - that was my left breast.  My right breast had very dense breast tissue and a lot
of cysts - which I had needle core biopsies and ultrasounds on over the last 2 years.  But the main reason I made my decision was the risk factor I had.  I understand your frustration - I felt it too.  I have peace of mind now and don't have to hold my breath once a year and think to myself "Is this the year?".  I hope I have helped.  I would be glad to answer any questions you have.  I will pray for strenght for you and an answer you are looking for.

[WorkingThroughIt]

Hi...

I had a mastectomy in November 06.  I was told about a new procedure called a Skin Sparing Mastectomy which involves immediate reconstruction.  The surgeon removes the nipple and then removes the tumor.  After the tumor has been removed, the surgeon then removes all breast tissue, leaving the skin.  The plastic surgeon then immediately reconstructs the breast using a silicone implant, placing it under the pectoral muscle and ensuring that it matches the remaining breast in size, droop, etc.  The plastic surgeon then closes using what looks like a beggars purse (if you bake, you'll be familiar with this), smooths it out and voila!

My reconstructed breast is really quite pretty!  I don't have a nipple, but my plastic surgeon and cancer surgeon made a small enough incision that much of my areole was preserved that there is a hint of a nipple.  Recovery was good. I was tired, and there was some discomfort.  Also Ihad to restrict movement of my right arm to prevent scar tissue from forming around the silicon implant.  The scar of the incision has faded and healed beautifully.  My husband tells me that it feels natural and looks very natural under my clothes, in a bra and a bathing suit. All in all - it was a good experience (which is saying a lot given it was a mastectomy for breast cancer!).

I hope this helps...

[Cowgirl37]

Wow!!  That is so encouraging.  You sound great and congratulations for making it through.  Ironically, I was just on the phone with my radiologist and he was explaining this exact surgery to me.  What a coincidence.  And what a great idea.

Thanks for sharing with everyone.    

[frustratedrg]

thank you for responding.  so far everyone seems to be happy in their decision.  which is amazing to hear.  i too, feel like im playing a waiting game.  after (and im not exagerating) 13 biopsies since im 20, (im now 53), its getting a little tiresome.  at times it feels as though its very obsessive.  
it does seem as though everyone is complaining about the drains.  how do the drains work and do you have to empty them.
also, did you have reconstruction.    

[frustratedrg]

sorry "fletch1119"  i just realized you did have reconstruction.

[frustratedrg]

thank you for your response.  you sound like your experience was a good one. im hoping that mine will be if i go that route.  i think its just making that decision thats a hard one and then the waiting for the day to do it.  i personally am more afraid of the unknown than going through pain.  that i know i can cope with that part.

[HazelLynn]

Hi, I had a mastectomy after having a lumpectomy three weeks before - I had 5mm of dcis with 1mm of invasiveness in the margins - they wanted to do a lumpectomy again, but I insisted they took it off.  I stayed in hospital for four days, had drains - they werent a problem, but there again I was in hospital and the nurses saw to all that.  It felt a bit weird when they took them out, but none of it mattered, the only thing I could think about and be glad about was that they had taken my breast away that could one day have killed me.  I was very very early stage, but I lost my mum to breast cancer, and having four children that are young, I didnt want them to go through losing me.  I have been told I am cured, I just hope they are right.  I am not going to have reconstruction as I am happy with the softie the hospital gave me, and am waiting now for the silicon prothesis.  One more thing, if I could go back in time, I would have asked for the mastectomy first and not the lumpectomy because of the stress and worry of it all.
Good luck, I wish you well.

[HazelLynn]

Hi, forgot to mention I had 13 lymph nodes removed, the breast and nodes proved clear of any invasion.  The worst part for me after the surgery was the pain down my arm, because they had cut the nerves, it hurt like mad.  I didnt bother with physiotherapy, I just dusted more and that sorted me out very quickly, it was a really good exercise - going higher each time, so now the pain has gone and my arm is back to normal.  The scar on my breast is rather lumpy, but I am not too bothered about that.
Hazel

[fletch1119]

The drains keep the blood away from the incision so there will be little scarring.  They are in for about 1 week and yes you have to keep them emptied.  They don't hurt - they are just a pain to have.  I agree with HazelLynn about the lumpectomy.  That is what they wanted to do with me and I said no.  Sounds like my surgery was similar to
WorkingThroughIt except I had expanders put in and then implants at a later date.  

[frustratedrg]

hi again.  i agree too.  at the time i had the lumptectomy i didnt know too much and was sooo afraid of loosing a breast so lumptectomy seemed like the only way.  its only now that ive been through all of these scares that i wish i had done it from the beginning.  it must be pretty nice to be able to sleep at night and have one less thing to worryabout.  but it has to be really scary right before the surgery.    

[fletch1119]

I was really not afraid until the day of surgery.  I knew that I was doing the right thing for me and I had decided to follow the path - but the day of surgery was really hard.  I didn't know what I was afraid of - I guess the unknown.  The fear left immediately.  I know that a strong family and faith is what got me through this.  The reconstruction has been one surprise after another but I have complete trust in my plastic surgeon and he has done some really nice work.  To be honest, more good has come out of this than I could have ever guessed.  It strengthened by faith and my marriage.  Don't second guess your past decisions - you did what was right for you at the time.  You will find the answers you are looking for within yourself.  Don't let anyone tell you what is best for you - only you know that.  Just keep searching and listening for your whisper and you will hear it.  I will continue to check in - please keep me informed on how you are doing.  Prayers for you...

[frustratedrg]

thank you.  its good to talk to people who are sort of in the same situation you are.  i dont have friends who have been through it so they dont always understand.  take care.

[Juliet2204]

Can reconstruction be done after any mastectomy?

[fletch1119]

I believe so

[frustratedrg]

this week i have an appt. with my surgeon to look at my mammos from april.  she will then decide if i need a biopsy or can wait  6 mos.  im sure she'll opt for the biopsy.

when i read your post again, i realized there is a very long span between surgery and expanders,  is that the way it always is?  

did they have to check any of your lymph nodes as you did it prophylacticaly.
ill let you know how i make out this week.  take care.

[Mary0327]

I had a mastectomy 11 years ago.  At the time of the mastectomy, I had a tissue expander inserted in order to prepare for a silicone implant at a later date.  I went home either one or two days after the surgery and was back at work in 4 weeks.  I didn't have much pain, but it was hard to find a comfortable position for sleeping for a few days.  After 6 months of chemotherapy and another month of recovery, I had surgery to replace the tissue expander with the silicone implant.  I was back at work after a few days.

Mary

[HazelLynn]

Hi, I just wanted to check in with you and see if you are doing ok? have you definitely decided what you are going to do and when?  I am now two months on from my surgery and feel fantastic (well I did until this morning and have now come down with the flu), but apart from that I am back to my  normal self - my husband said that as soon as I was told I was cured after the mastectomy I dropped ten years. You said on one of your posts that it must be scary before the surgery - I had been in such a state ever since I had the mammogram showing the microcalcifications - because I have 4 young children, and I was freaking out all the time, so they gave me pills to calm me - all during the stay at the hospital almost to me being discharged- as soon as I saw the doctor a couple of weeks later with my results when he told me I was cured - I clicked back to being the strong, level headed woman that I had always been in an instant - I couldnt believe the change that the good news brought about.  I asked him for my prognosis - asking IS IT TEN YEARS, he laughed at me and said FOREVER ( i know this is a big statement and understood him to mean that its for a long time!, but the relief after the mastectomy was tremendous and I am glad that I told him to take the damn thing off!!.

[frustratedrg]

hi, how nice to hear from you and that you are doing as well as you are.  what a relief it must be for you.  i have an appt. with my breast surgeon tomorrow.  she'll look at my films and decide what to do.  having the ability to communicate with all of the women who've been there really helps.  it has calmed me down quite a bit.  i am realizing there is life after a mastectomy, so therefore, the fear isnt as great as it once was.  I remember how nervous i was when i had the lumpectomy (i also had 3 areas of calcifications and another lump removed all on that same day). it took the surgeon many many hours and added with the wire localization in the morning, I was there from about 9:00 in the morning til about 7:00 at nite.  quite a day.
even though i had breast cancer, i was relieved that it only was in 1 area.  imagine that.
so, anyway,  glad you are doing well and thank you for thinking of me.  i will report back after my appt.  take care  

[frustratedrg]

the reconstruction that you had was all done at one time? meaning not in the 3 steps i keep hearing about?
thismay be a silly question, but do the new breasts feel heavy as though something is laying on your chest?
also, do you remember how long it took to feel good again?

justa few questions.  hope you are around to answer.  thanx

[frustratedrg]

i just posted an e-mail for you, spelled your "name wrong".  dont know if youll get it

[fletch1119]

Hi - sorry I missed your last post.  My tissue expanders were put in the same time as my mastectomy.  I had both surgeons there at the same time.  The expanders were in from May - Oct.  It all depends on how much they are able to put in at the time of surgery and then the size you choose to be after (I chose to have bigger - it was my prize at the end of my journey!).  HazelLynn is right, it is sometimes a little hard to sleep because they are so firm - but a few pillows more in bed and I was able to adapt.  Let me know how everything goes for you.  

[fletch1119]

How are you doing after surgery?  I see you are at the beginning stages but sounds like you are doing so well.  Believe me - it only gets better from here.  Try putting some pillows under your breast when sleeping - it takes some of the pressure off so it doesn't feel quite so hard.  Keep me posted on your progress - I have 1 stage left - tattoo and then I am done.  My plastic surgeon released me this month and I told him I won't know what to do without an appointment with him!  We have been through this together.  He told me he will see me once a year to make sure everything is looking OK.  If you have any questions just let me know.  I am so happy for your peace of mind!

[frustratedrg]

im glad you are doing well,  as i am in the situation where i am trying to make a decision, please let me know how you are doing?  thanks.  take care.  hope you are feeling well,

[HazelLynn]

Hi, Thanks for your posts, I am over the flu now and feel really well.  Most days are good, but some days I think the reality of what I have been through hits me and I go really down and start to question everything and I feel that I want and need reassurance that I am definitely! going to be alright for a long time - I suppose we all feel like that. I keep thinking about all the what ifs????.  I am not due to see the doctor until June, I think I need to see him just to know that I still have his support and monitoring.  I think on one of these posts one of the ladies got me mixed up with someone else - I havent had tram flaps or anything, I am not going to have a reconstruction, I am happy to have the prothesis - I keep saying to everyone, I would rather spend the money and have my crows feet sorted out ha ha!  Just to get back to your making a decision, I cannot advise you either way, all I can say is that I am glad I had the mastectomy.  My mastectomy was clean as were my lymph nodes, they had apparently got everything when they did the lumpectomy, and after that, it was really strange as my nails grew really long and healthy looking, a ganglion I had in my wrist disappeared, a cyst in my leg and a cyst in my left breast, it seemed more than a coincidence - has anyone else experienced this?  

You must have had your appointment by now, how did you get on, please let me know.
Hazel

[frustratedrg]

My appt for the biopsy is June 18th, although I may move it up.  My report was a Birad 3 so the radiologist wasnt tooo concerned, although as having breast cancer in the past, i have to check it ALL out.  Im drained, exhausted and pretty much fed up.  ive been playing this game for almost 7 years with hardly a mamo without a problem.  You begin to wonder, is this how im going to live the rest of my life?  
Have you had genetic testing?  That was another subject my Dr. discussed with me.  
Something else to worry about.
I dont think you ever stop worrying, but in between checkups, i try my best to put it out of my mind.  Unfortunately, it just seems as though my checkups need checkups.
Anyway, glad your feeling better physically.  I think the fact that your mastectomy was successful and your nodes were clean, you should RELAX.
Take Care, keep me posted and I will too.

[WorkingThroughIt]

Hi...

yes - my mastectomy and reconstruction were done at the same time.  the entire procedure took 1 hour from being put under general anesthesia to being rolled into recovery.  I woke up with two breasts - my natural breast and my new fully reconstructed breast. that, and a lymph drain which was removed a couple of days later. I spent the night in the hospital - was discharged around 12N the next day.

this procedure - skin sparing mastectomy - is not new, but it isn't widely used.  I don't know why, as the results are amazing. It's been about 15-months since I had my mastectomy and reconstruction, and I'm starting to get sensation back in my reconstructed breast, including the areole/nipple area.  

I don't know where you live or where you are having treatment, but I do know that Cleveland Clinic performs skin sparing mastectomies. I live in San Diego, and this procedure is well-known amongst surgeons and plastic surgeons here.

You deserve to have the very best options available to you... maybe your primary care physician knows of a surgeon who is experienced in this type of surgery and reconstructive surgery.

[frustratedrg]

hi,  yes my breast surgeon did mention that procedure, but didnt go into details though.  i thought with that procedure you couldnt use an implant. i guess im wrong.  i would only want an implant as taking tissue from my stomach does not appeal to me at all.  its encouraging that youve done well.   does the breast feel natural or does it hurt from time to time?  do  you get any follow up visits any longer or are you totally done?

my dr. wants me to do the BRAC test also.  im a little nervous for that too.     i live in new york and there are a lot of options and experienced drs. here also.

my biospy is scheduled for June 18th.  ill see at that point what the next step is if it isnt b9.

[frustratedrg]

hi,  i was just wondering and i know it was 11 years ago, but if you recall, could you have gone back to work earlier than 4 weeks or were you in discomfort. what is your line of work?  is the tissue expander uncomfortable?

[HazelLynn]

Hi thanks for your post.  I will check up on how you are getting on in June and let you know how my appointment/checkup goes with the doctor - thats late June, but for now I am going to give the websites a break as I am driving myself nuts with all the WHAT IF THIS AND WHAT IF THATS, I have been on this computer researching since November, and have worn myself out, as I am sure every lady on the sites have done too, so for now take care.
Best wishes
Hazel

[frustratedrg]

Hi,  that sounds like the best idea you could have.  go and have a wonderful summer.

take care.  feel good.  have fun.

[frustratedrg]

Hi,  I just read your post on your sore ribs.  My prayers are with you.  Im guessing that it probably is just a soreness as any area of your body can be.  Unfortunately, once weve been through this, every ache and pain can seem like its something.  Probably its not.   Keep me posted and take care.