Advice please

childofthestars
childofthestars Member Posts: 251 Member

Hi ladies

I'm booked in to have double mastectomy with DIEP flap reconstruction on 12 October.  Can anyone give advice as to what to expect following surgery and what sort of clothing/underwear I'm going to need?????  I'm getting a little bit aprehensive eeeeek!!

Michelle x

 

 

Comments

  • lintx
    lintx Member Posts: 697
    Hi Michelle

     

    You should be getting all sorts of instructions from the plastic surgeon's nurse soon.  I had a spiral notebook from them several weeks in advance.  I was told to wear a huge white cotton t-shirt cut up the front because of the tubes and medicine ball in my stomach.  No underwear in the beginning. There will be swelling at the incision site.  As it heals, bikini underwear is most comfortable. My pain was minimal, and I was able to walk a mile each day within a couple weeks.  After the tubes are removed, it is so much easier to get around.  I was back to my normal 4 mi walk in the mornings in no time.  Do nothing without DR's permission, however.  If you follow orders strictly, I promise you'll do fine.  Many things are common sense, like no lifting more than a soup can in the beginning.  Truly, just be a good patientSmile  Let us hear from you when possible.  Hugs, Linda 

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    Very comfy, clothing which

    Very comfy, clothing which opens easily at the front, cotton is best.  Put the drains in pockets or pin them on clothing so as not to pull where they enter the body.  Mine stung like crazy and I have no idea why.  Ask how to milk drains incase they block, easy fix don't worry.  No lifting, ironing, vacuuming, STRETCHING.  No shaving keep infection away.  Hand shower to wash hair will make you feel nice and clean.  Make sure you eat and drink and rest.  Take any help you can.  The first nights or more sleeping in a recliner on your back might be the most comfortable, otherwise prop yourself up in bed with a load of pillows.  Take your pain meds it is only fora while.  Not fun, sorry but you can do it.  I had one done one month and the other side the next month.  If had the choice I would have preferred had them do e at the same time to get it over with.

  • childofthestars
    childofthestars Member Posts: 251 Member

    Very comfy, clothing which

    Very comfy, clothing which opens easily at the front, cotton is best.  Put the drains in pockets or pin them on clothing so as not to pull where they enter the body.  Mine stung like crazy and I have no idea why.  Ask how to milk drains incase they block, easy fix don't worry.  No lifting, ironing, vacuuming, STRETCHING.  No shaving keep infection away.  Hand shower to wash hair will make you feel nice and clean.  Make sure you eat and drink and rest.  Take any help you can.  The first nights or more sleeping in a recliner on your back might be the most comfortable, otherwise prop yourself up in bed with a load of pillows.  Take your pain meds it is only fora while.  Not fun, sorry but you can do it.  I had one done one month and the other side the next month.  If had the choice I would have preferred had them do e at the same time to get it over with.

    Thanks Roz
    thankfully the

    Thanks Roz

    thankfully the won't be sending me home until all drains are out - that's one worry less. I have a recliner chair in shed so will dig that out. Need to sort out clothing but other than being s**t scared am nearly ready to go. 

    Pmichelle x 

  • Rague
    Rague Member Posts: 3,653 Member

    Thanks Roz
    thankfully the

    Thanks Roz

    thankfully the won't be sending me home until all drains are out - that's one worry less. I have a recliner chair in shed so will dig that out. Need to sort out clothing but other than being s**t scared am nearly ready to go. 

    Pmichelle x 

    How long do you expect to be in hospital?

    I did not have BMX nor did I have recon (UMX and being IBC recon was not an option).  I had 2 drains - first removed at roughly 2 weeks post - 2nd at 4 weeks post.  I developed a LARGE seroma after 2nd removed - it was still showing on CAT 4 mths later.

    Drains are a major pain in tne patooty BUT out too soon can be a lot more problems.

    Winyan - The Power Within

    Susan

     

     

     

  • guimaraes
    guimaraes Member Posts: 6

    Very comfy, clothing which

    Very comfy, clothing which opens easily at the front, cotton is best.  Put the drains in pockets or pin them on clothing so as not to pull where they enter the body.  Mine stung like crazy and I have no idea why.  Ask how to milk drains incase they block, easy fix don't worry.  No lifting, ironing, vacuuming, STRETCHING.  No shaving keep infection away.  Hand shower to wash hair will make you feel nice and clean.  Make sure you eat and drink and rest.  Take any help you can.  The first nights or more sleeping in a recliner on your back might be the most comfortable, otherwise prop yourself up in bed with a load of pillows.  Take your pain meds it is only fora while.  Not fun, sorry but you can do it.  I had one done one month and the other side the next month.  If had the choice I would have preferred had them do e at the same time to get it over with.

    HI
    I'VE JUST JOINED THIS SITE

    HI

    I'VE JUST JOINED THIS SITE SO I MAY BE DOING THIS WRONG!

    I am due to have a diep flap in the next few months. I had a tissue expander before having chemo and radiotherapy in 2011 and an implant in 2012 but I just haven't been happy with it, the skin is too thin for the implant to be secure and it doesn't look natural.

    A new surgeon suggested this surgery which was music to my ears! My concern however is that I may not have enough belly fat. The original surgeon in 2011 didn't think I had enough which is why we went for the implant. I'm not skinny by any means but being a bit pear shaped I don't tend to put so much fat on my belly. I was advised to eat high fat food to build up a belly but I don't know how far to go with all this getting fatter! Should be a welcome relief I guess! If anyone has been in a similar situation with not quite enough belly fat but had the diep flap anyway and it was a success, that would be reassuring to hear. Or knows the best way to build a fat belly QUICK that would be cool!

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    guimaraes said:

    HI
    I'VE JUST JOINED THIS SITE

    HI

    I'VE JUST JOINED THIS SITE SO I MAY BE DOING THIS WRONG!

    I am due to have a diep flap in the next few months. I had a tissue expander before having chemo and radiotherapy in 2011 and an implant in 2012 but I just haven't been happy with it, the skin is too thin for the implant to be secure and it doesn't look natural.

    A new surgeon suggested this surgery which was music to my ears! My concern however is that I may not have enough belly fat. The original surgeon in 2011 didn't think I had enough which is why we went for the implant. I'm not skinny by any means but being a bit pear shaped I don't tend to put so much fat on my belly. I was advised to eat high fat food to build up a belly but I don't know how far to go with all this getting fatter! Should be a welcome relief I guess! If anyone has been in a similar situation with not quite enough belly fat but had the diep flap anyway and it was a success, that would be reassuring to hear. Or knows the best way to build a fat belly QUICK that would be cool!

    I am not a dr nor a

    I am not a dr nor a nutrionist. But personally, I would be concerned with eating high fat foods to gain weight. I would worry about the negative health impacts of eating high content fatty foods. Who told you to eat high fat foods? 

    I am hoping one of the others on here could give you more advice on how to gain a little weight in a more healthy way.

    I were you, I would make an appt. and express your concerns and have them take a look at your belly. If that is the surgery you truly want, perhaps ask to see a nutrionist or dietician to help you can weight more with more healthier foods. I don't know much about reconstruction, but I know there are several types. You need to find the best option for your particular circumstances. Seeing the plastic surgeon should also take away some of your fears of unknowns right now by discussing your concerns.

    I wish you luck with everything. Let us know how you are doing!!!

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    guimaraes said:

    HI
    I'VE JUST JOINED THIS SITE

    HI

    I'VE JUST JOINED THIS SITE SO I MAY BE DOING THIS WRONG!

    I am due to have a diep flap in the next few months. I had a tissue expander before having chemo and radiotherapy in 2011 and an implant in 2012 but I just haven't been happy with it, the skin is too thin for the implant to be secure and it doesn't look natural.

    A new surgeon suggested this surgery which was music to my ears! My concern however is that I may not have enough belly fat. The original surgeon in 2011 didn't think I had enough which is why we went for the implant. I'm not skinny by any means but being a bit pear shaped I don't tend to put so much fat on my belly. I was advised to eat high fat food to build up a belly but I don't know how far to go with all this getting fatter! Should be a welcome relief I guess! If anyone has been in a similar situation with not quite enough belly fat but had the diep flap anyway and it was a success, that would be reassuring to hear. Or knows the best way to build a fat belly QUICK that would be cool!

    Originally I had a pedicled

    Originally I had a pedicled TRAM flap in 1987.  Ugh, hard surgery.  PS took part of my abdominal muscle and left blood vessels attached and he then tunneled the flap and vessels under my chest and ribs and made an incision and pulled the mess through and sewed it in place.  Long recovery!  I had an implant on the side without cancer to match the flap (I was never a candidate for an implant on the cancer side because the tumor was too large and my breast too small).

    Anyway, I had problems with the implant (pain and scarring) on the side without cancer.  When 2 of my 3 sisters turned up with breast cancer, my breast surgeon wanted my "good" breast off.  I did not want another implant, so, because my same PS couldn't use my abdomen again, I had an SGAP free flap - he took some fat and blood vessels from my rear and cut it free and then connected the flap to my chest using microsurgery.  I think that was in 1995.  Anyway, I am sure the technique has only gotten better since then!

    My original plastic surgeon, Dr. Robert J Allen, who looked 12 when he did my first surgery, is credited with inventing the diep and sgap muscle sparing free flaps.  He will take a flap from anywhere you have a little fat...lol.  He did both surgeries.  At the time of my second surgery, he informed me that he no longer did implants beause he believes that for most, there is about a 10 year life to them.  Many get more years before problems, but I didn't.

    All I know is the second surgery, a free flap, was way easier than the first.  Which is not to say any of the surgeries is a piece of cake.  The East seems to do more free flap surgeries, in part because everyone had to learn from Dr. A (who taught himself from corpses-a real Doogie Howser prodigy).  He practices in multiple places in the East and South and has taught many, many plastic surgeons his technique.  It is now more common in the West, but, when my little sister looked into a diep 17 years ago, it was not really done by the plastic surgeons in San Diego then.

    If you find a good ps, they will tell you the best fat to use for your flap.   I would make sure that they do the free flap and microsurgery as it is much less painful.  Tunneling (pedicled) is for the birds!  Here are some fat sites that Dr. A uses: http://www.diepflap.com/br_treatmentoptions.html

    And I am not pushing Dr. A. (although he is great) because he has trained many qualified docs now and they have trained more.  Many out there are doing this, but they do have to have the specialized microsurgery training.  Just make sure that your PS has done many of these surgeries.

    P.S. Other than my boobs being uneven (probably because they were done at separate times and because the cancerous breast was difficult because the breast surgeon removed a lot of skin and tissue-original tumor started at the nipple and spread through all of the ducts just like a big nasty spider), I have had no problems (I hope I didn't just jinx myself).  No pain, all natural tissue.  Good luck and pm me if you need me.

    P.P.S. Another article on the history of this procedure: http://www.nytimes.com/2008/12/23/health/23beauty.html?pagewanted=all&_r=0

     

     

  • guimaraes
    guimaraes Member Posts: 6

    I am not a dr nor a

    I am not a dr nor a nutrionist. But personally, I would be concerned with eating high fat foods to gain weight. I would worry about the negative health impacts of eating high content fatty foods. Who told you to eat high fat foods? 

    I am hoping one of the others on here could give you more advice on how to gain a little weight in a more healthy way.

    I were you, I would make an appt. and express your concerns and have them take a look at your belly. If that is the surgery you truly want, perhaps ask to see a nutrionist or dietician to help you can weight more with more healthier foods. I don't know much about reconstruction, but I know there are several types. You need to find the best option for your particular circumstances. Seeing the plastic surgeon should also take away some of your fears of unknowns right now by discussing your concerns.

    I wish you luck with everything. Let us know how you are doing!!!

    diet

    Thanks for your suggestions. I find that being given the Ok to up the intake I've lost the desire to eat the 'forbidden fruit' anyway!

    I think the doctor meant higher fat milk and cheese etc not burger and chips which I don't like anyway. I do enjoy healthy food so I don't think I will become unhealthy.

    i was just wondering if it was possible to eat certain foods that can put fat onto just your belly! But thats's kind of silly!

    I think you are right about geting good advice from a nutritionist however.

    thanks

     

  • guimaraes
    guimaraes Member Posts: 6

    Originally I had a pedicled

    Originally I had a pedicled TRAM flap in 1987.  Ugh, hard surgery.  PS took part of my abdominal muscle and left blood vessels attached and he then tunneled the flap and vessels under my chest and ribs and made an incision and pulled the mess through and sewed it in place.  Long recovery!  I had an implant on the side without cancer to match the flap (I was never a candidate for an implant on the cancer side because the tumor was too large and my breast too small).

    Anyway, I had problems with the implant (pain and scarring) on the side without cancer.  When 2 of my 3 sisters turned up with breast cancer, my breast surgeon wanted my "good" breast off.  I did not want another implant, so, because my same PS couldn't use my abdomen again, I had an SGAP free flap - he took some fat and blood vessels from my rear and cut it free and then connected the flap to my chest using microsurgery.  I think that was in 1995.  Anyway, I am sure the technique has only gotten better since then!

    My original plastic surgeon, Dr. Robert J Allen, who looked 12 when he did my first surgery, is credited with inventing the diep and sgap muscle sparing free flaps.  He will take a flap from anywhere you have a little fat...lol.  He did both surgeries.  At the time of my second surgery, he informed me that he no longer did implants beause he believes that for most, there is about a 10 year life to them.  Many get more years before problems, but I didn't.

    All I know is the second surgery, a free flap, was way easier than the first.  Which is not to say any of the surgeries is a piece of cake.  The East seems to do more free flap surgeries, in part because everyone had to learn from Dr. A (who taught himself from corpses-a real Doogie Howser prodigy).  He practices in multiple places in the East and South and has taught many, many plastic surgeons his technique.  It is now more common in the West, but, when my little sister looked into a diep 17 years ago, it was not really done by the plastic surgeons in San Diego then.

    If you find a good ps, they will tell you the best fat to use for your flap.   I would make sure that they do the free flap and microsurgery as it is much less painful.  Tunneling (pedicled) is for the birds!  Here are some fat sites that Dr. A uses: http://www.diepflap.com/br_treatmentoptions.html

    And I am not pushing Dr. A. (although he is great) because he has trained many qualified docs now and they have trained more.  Many out there are doing this, but they do have to have the specialized microsurgery training.  Just make sure that your PS has done many of these surgeries.

    P.S. Other than my boobs being uneven (probably because they were done at separate times and because the cancerous breast was difficult because the breast surgeon removed a lot of skin and tissue-original tumor started at the nipple and spread through all of the ducts just like a big nasty spider), I have had no problems (I hope I didn't just jinx myself).  No pain, all natural tissue.  Good luck and pm me if you need me.

    P.P.S. Another article on the history of this procedure: http://www.nytimes.com/2008/12/23/health/23beauty.html?pagewanted=all&_r=0

     

     

    diep flap

    Thanks!

    Thats brilliant, I'll check out those sites.

    The SGAP sounds like a good option although I'm not sure I have too many options as it's on the NHS (still hanging in  there luckily!)

    I've come round to thinking it's ok of they reduce my breast as long as it's natural looking and feeling and ideally they could reduce the normal breasts to the same sizish.

    If that was possible and I could have an effective nipple constructed too (the last one failed because of the radiated skin), that would be great.

    Hard to believe how long this has taken, 3 years later still not there! But you kind of adjust mentally to the whole thing don't you?

    Thank you for all your advice.

    GOOD TO HEAR YOU ARE THRIVING!

     

  • guimaraes
    guimaraes Member Posts: 6

    I am not a dr nor a

    I am not a dr nor a nutrionist. But personally, I would be concerned with eating high fat foods to gain weight. I would worry about the negative health impacts of eating high content fatty foods. Who told you to eat high fat foods? 

    I am hoping one of the others on here could give you more advice on how to gain a little weight in a more healthy way.

    I were you, I would make an appt. and express your concerns and have them take a look at your belly. If that is the surgery you truly want, perhaps ask to see a nutrionist or dietician to help you can weight more with more healthier foods. I don't know much about reconstruction, but I know there are several types. You need to find the best option for your particular circumstances. Seeing the plastic surgeon should also take away some of your fears of unknowns right now by discussing your concerns.

    I wish you luck with everything. Let us know how you are doing!!!

    Hi again, just thought I'd

    Hi again, just thought I'd let you know that I've made another appointment to discuss my worries with my surgeon. Thanks for the advice!

  • survivorgal
    survivorgal Member Posts: 3
    Diep flap

    Hi, I just had bilateral mastectomy with Diep flap stage1 and stage 2. Am very pleased with the results. They should give you bras to wear afterwards. They have to be worn day and night for awhile. You will have some discomfort but it's a small price to pay to be cancer free and pretty. I keep having to get smaller size clothes because my stomach is so flat now. I bought size 12 jeans, then size 10. I may have to go down to size 8 once the swelling goes completely away! I look beautiful now, have the body of a 14 year old. It is a wonderful consolation prize for having to go through the cancer, chemo, etc.

    Good luck with everything. If you have any more questions contact me.

    Helen

  • survivorgal
    survivorgal Member Posts: 3
    guimaraes said:

    HI
    I'VE JUST JOINED THIS SITE

    HI

    I'VE JUST JOINED THIS SITE SO I MAY BE DOING THIS WRONG!

    I am due to have a diep flap in the next few months. I had a tissue expander before having chemo and radiotherapy in 2011 and an implant in 2012 but I just haven't been happy with it, the skin is too thin for the implant to be secure and it doesn't look natural.

    A new surgeon suggested this surgery which was music to my ears! My concern however is that I may not have enough belly fat. The original surgeon in 2011 didn't think I had enough which is why we went for the implant. I'm not skinny by any means but being a bit pear shaped I don't tend to put so much fat on my belly. I was advised to eat high fat food to build up a belly but I don't know how far to go with all this getting fatter! Should be a welcome relief I guess! If anyone has been in a similar situation with not quite enough belly fat but had the diep flap anyway and it was a success, that would be reassuring to hear. Or knows the best way to build a fat belly QUICK that would be cool!

    Had the Diep, stage 1 on Oct.

    Had the Diep, stage 1 on Oct. 1 and stage 2 on Dec. 20. I didn't have a great deal of belly fat either but the result is beautiful. My new breasts are small but very pretty. If your surgeon feels you have enough to do the job, he should be able to tell you. Surviving cancer is wonderful, surviving and feeling pretty is even better. I look beautiful in my clothes now and have dropped 3 dress sizes. My advice is to have faith in your dr. Eating really fatty foods could have negative health risks. You need to be as healthy as possible now after your cancer fight.

    Helen 

  • guimaraes
    guimaraes Member Posts: 6

    Had the Diep, stage 1 on Oct.

    Had the Diep, stage 1 on Oct. 1 and stage 2 on Dec. 20. I didn't have a great deal of belly fat either but the result is beautiful. My new breasts are small but very pretty. If your surgeon feels you have enough to do the job, he should be able to tell you. Surviving cancer is wonderful, surviving and feeling pretty is even better. I look beautiful in my clothes now and have dropped 3 dress sizes. My advice is to have faith in your dr. Eating really fatty foods could have negative health risks. You need to be as healthy as possible now after your cancer fight.

    Helen 

    diep flap

    HI HELEN

     

    I LOVE THE IDEA OF BEING IMPROVED! GOOD FOR YOU!

    Much deserved!!

    I am a bit wary of getting my hopes up too much since the result of the tissue expander and implant option was not so good.

    First I had a lot of 'wrinkling' I think they call it. which was upsetting. I had two injections of fat grafting which improved the result but it still looked and felt very odd

    and then I had a failed nipple surgery.

    None of the above gave a very desirable result, mainly because the skin that was left was so thin and also damaged by radiotherapy.

    One of the surgeons I saw lat year said he thought I should stop doing the surgerys, accept it and get on with my life. He also told me my reconstruction wasn't a breast it was 'breast like!'  I kind of think there's only one person who can tell you to give up and accept the situation and that's yourself!

    I went back to see one of the  surgeons recently and she thinks I will have enough fat for a new breast ( my relaxed eating habits have worked!)

    They will cut away the damaged skin and replace it with skin from my belly which should also mean that when they make the nipple it is more likely to succeed.

    It's great to hear everybody's positive stories. I have not shown anyone my boobs since Feb 2011 a(apart from many doctors of course!),and when my daughter

    walks in on me when I'm naked I get really stroppy with her. So I guess I don't have a very positive body image at the moment. Am actually getting quite tearful writing this!

    It would be amazing to like what I see in the mirror again. So now I just have to wait for a date!!

     

    All the Best to everyone

  • tasha_111
    tasha_111 Member Posts: 2,072

    Diep flap

    Hi, I just had bilateral mastectomy with Diep flap stage1 and stage 2. Am very pleased with the results. They should give you bras to wear afterwards. They have to be worn day and night for awhile. You will have some discomfort but it's a small price to pay to be cancer free and pretty. I keep having to get smaller size clothes because my stomach is so flat now. I bought size 12 jeans, then size 10. I may have to go down to size 8 once the swelling goes completely away! I look beautiful now, have the body of a 14 year old. It is a wonderful consolation prize for having to go through the cancer, chemo, etc.

    Good luck with everything. If you have any more questions contact me.

    Helen

    Survivorgal

    What fantastic news!  Lovely to hear this, so happy you are feeling and looking so good.  Jxxxx

     

  • guimaraes
    guimaraes Member Posts: 6

    Had the Diep, stage 1 on Oct.

    Had the Diep, stage 1 on Oct. 1 and stage 2 on Dec. 20. I didn't have a great deal of belly fat either but the result is beautiful. My new breasts are small but very pretty. If your surgeon feels you have enough to do the job, he should be able to tell you. Surviving cancer is wonderful, surviving and feeling pretty is even better. I look beautiful in my clothes now and have dropped 3 dress sizes. My advice is to have faith in your dr. Eating really fatty foods could have negative health risks. You need to be as healthy as possible now after your cancer fight.

    Helen 

    I've done it!

    OK I'm out the other side!

    There was a last min cancellation so

    one week in hospital and home yesterday.

    Hospital staff so wonderful, kind and funny and the nurses said straight away that it is a very aesthetic result.

    It's very nice to be rid of the old damaged skin with its dents and bumps.

    I think there will be more work and perhaps some fat grafting to get them to match up but I feel so much happier

    and I know I've done the right thing. I still have one drain in but I think that will go tomorrow.

    I finally feel that I can 'move on'!!

    x

    .