Get Connected Day!

Heidihoe

Thanks Ree I will talk again as a little of the  terminology I don't understand so would like you and others to educate me.

You have had it hard for a long time, I would have had them cut off a long time ago with all the testing and worry etc.

I saw a programe on SBS I think last week about a girl who's Mum died and her search for infomation, it was amazing now what they can do removing the nipple and pulling out all the breast tissue through that hole and giving you perky silicones and sewing nipple back on. Apparently there is a min chance of nipple cancer?

Another thought I don't really know is true or not???

Good luck talk soon

Heidi

Ree

Just a quick reply re: removing and replacing the nipple. My surgeon advised me against it, even though those cells came back clear, it means leaving more breast tissue cells behind and increasing the chance of (re)occurence in that area. I was devasted, was VERY attached to my nipples (pardon the pun) but I chose in the end to have a clean sweep, as such and make my statisttical chances as low as I could. Perhaps some of the other ladies got different info or advice? This is one of the questions you would need to talk to your surgeon about if you choose to go down the path of surgery...

Heidihoe

Hi Ree,

Are you Post Op now and all healed?

If so are you happy with things?

The look, the feel, the emotion??

Did you get nipples tattooed on?

Sorry to be so blunt but I need to ask and know.

Heidi

louiseg

Hi Heidi & Ree

I had a mastectomy and reconstruction on my left breast back in 2003 and then was diagnosed again in July 2010 and had a mastectomy and reconstruction done on the right side!  you could say I've had the works!!  The first time I had a TRAM flap reconstruction which uses part of your flabby tummy (great, got rid of the baby bulge!!!) to make a new breast.  The second time I had the same as Ree, tissue expanders and now permanent prosthesis.  The breast with the TRAM flap reconstruction is a lot softer than the one with the implant - more realistic in my mind, but I am also really happy with the implant side.  With the implant I had my lattisimus dorsi muscle moved from my back to the front and the implant is behind that.

The beauty of having the TRAM flap operation as opposed to the implants is that if you lose or gain weight, your breasts grow or shrink accordingly.  Also, as I said it is also a lot softer.

With both reconstructions I have had my nipples reconstructed also.  My surgeon uses the skin on the reconstructed breast to make a new nipple.  There are no grafts so maybe your surgeon does it differently Ree??  I had the left one tattooed after the surgery last time and was really happy with the result.  It looks very lifelike LOL,  I have to wait another couple of months before I can have the other side done as I only had the tissue expander replaced with the permanent prosthesis at the end of Feb.  My surgeon did the nipple reconstruction at the same time as this operation, which was great

Obviously once you have had your nipples removed there is no longer any feeling in them, even if you have them reconstructed, so I definitely don't have to worry about the "high beams" being on (to use your terminology Ree!!).

I am in the process of organising to get genetic testing done but haven't got an appointment yet and I understand that it could be a few months yet before I do.  I have a cousin who was diagnosed before the age of 40 and myself with 2 separate diagnosis (one at 35 and the other at 42).  My grandmother also died of breast cancer. If I test positive to the gene I may decide to have my ovaries removed so that I don't have to go through all of this a third time!

Please don't hesitate to ask any questions regarding the reconstructions etc.  That's how we help each other

Louise xx

PS my pain was minimal both times, although the TRAM flap is more painful due to the major abdominal surgery.  I had a couple of weeks off work each time.

Heidihoe

Hello Louise

You have answered a lot of the other things I was worrying about and didn't know what others thought.

I also want to get my ovaries removed, TO GET RID OF AS MUCH USELESS ORGANS/TISSUE THAT ARE NOLONGER NEEDED AS i HAVE 3 WONDERFUL BOYS, I WANT TO BE AROUND FOR SO WHY HANG ONTO potential risk??

I thought I'd like to use my tummy fat to use for boobies. But I'm scared as I have keloid (not spelt right) scaring and it results in thick purple bubble like scars on my body. I'll look like a bloody mess if they cut my back for muscle, my stomach for tissue and remove nipple!

Sounds good from someone like you because you have experienced BOTH approaches.

Why didn't you go the same technique again instead of going for another approach with second boob?

Is it a must to have muscle taken from somewhere else in body and placed in breast area??

Did the skin where your original breast was stay or go in both proceedures? As I read that cells can be in the skin as well as the breast tissue and nipple.

When the surgeon reconstructs the nipple does he just achieve this by clustering and clumping tissue into a PUCKERED SHAPE?

I keep hitting my Cap Lock key on the keyboard so forgive my writing!

Hummm..... I'm excited to learn so much more.

For me, the education takes away the fear!

Thank you so much and maybe you can chat to the familial cancer counsellor to see whether you need to have the test done or not as maybe they can work out if you are a high risk with your family history as it sounds to me like you are, so why worry about testing just do it.

If your Dr ok's it and you want to, you certainly have your own history to back up why you want it done.

THANK YOU so much for your honesty and sharing of these sensitive issues with me and others. I know it's hard and that's why I really commend all these brave lady online!!!!

Well Done and thank you all for all the help to work through this situation.

Heidi

Heidihoe

Thanks for that.

So you get your new perky boobies Friday I hope your husbands home to see them and help out. You must be very excited! You are nearly there!!!

I really hope it all goes well and you wake up to the new you, feeling good.

In 3 months time, you deal with another thing it just seems to take so.... long to get from start to finish!

I also think it depends on the Dr and surgeon you get how things are approached.

I have been on the phone all morning trying to find out if they have familial counselling here in Ballarat or whether I have to go to Melbourne or Geelong for it about 1 hour consult for the first one and filling in of forms.

Because the Dr has no idea! i ALSO SPOKE TO THE pATHOLOGY AND A SCIENTIST there today who explained that the blood I had sent cannot be used as it was not initialled by me which is one of the proceedures that you are agreeing it is your blood. Plus it will take some time to book in and see a counsellor to find out about how it effects your future job prospects and health insurance as you may not be able to get cover! You must disclose any genetic testing for ins. policy. Plus costs etc...

Anyway I'm talking too much!

A slow road is what I'm finding out.

Good news Wed I go have ultra sound to check lump in right boob to see if it's bigger. So doing the right thing there.

Hope you are doing ok, will contact you soon. In some pain at the moment with my RA and still not well with ear infection etc.

Bye for now.

H

Heidihoe

Hi Ree

I thought that if I am scared due to the keloiding I should not look at myself as unattractive but more admiringly ... the battle scars of life, they can remind me everyday....

I am strong, I am alive!  I am a warrior! I keep getting hit but I keep fighting back so I will fight to the end and never give up, no matter how scared I become.

I feel like crying now because both my cousins never gave up they kept fighting and were very strong.

I have used the steroid creams and heard that they thin the skin.

You know I would be clever to get the whole lot out too as my periods have been very heavy as I get older. Who needs periods anyway, I'd be happy to not have to go through that every month!

Heidi

louiseg

Hi Heidi

I didn't have a TRAM reconstruction the second time because my tummy didn't grow back!  I've got a lovely flat stomach now, which is a huge bonus

I kept the majority of my skin with both mastectomies - all except a little area on each side where the nipple was.  My surgeon said that it is rare to get any BC coming back in the skin of the breast unless there was a tumour very close to the surface.  He simply feels the skin over my reconstruction every time I go to see him and I look out for changes (which I am not expecting to get).

I scar pretty badly too with quite lumpy dark scars.  My TRAM scar is very low down (similar to where a caesarian scar would be) and I really don't notice is.  I can still where a bikini if I am feeling brave LOL.  The one on my back hasn't scarred badly at all.  I rubbed it daily with Bio oil after the op and it certainly helped a lot

My surgeon prefers to use a muscle when he does a tissue expander type reconstruction because he thinks it gives a better result.  He doesn't like to put the expanders straight under the skin.  If you have a TRAM flap reconstruction you don't need to take muscles etc from elsewhere in your body.

For the nipple, the surgeon "creates" a new nipple from the tissue that is there.  I am not exactly sure how he does it but, other than the lack of colour at the moment, you wouldn't know that it wasn't real!  Sooooo lifelike!

Anything else that I've forgotten or you need to ask, I'm around

Louise

Heidihoe

Hi Louise

Me again, so....

if I understand correctly I could get nipple cut out leaving a hole? which they don't turn into a nipple straight away,why?

Stomach off and tissue replaces breast tissue removed, so do they cut you underneath your boob in like a smily shape and stick new tissue in or make nipple hole wider and push it in there? and sew up hole?

Because I would imagine that my bra would rub on a cut underneath especially with keloiding???

Sorry I don't really know very much and others know everything I feel really stupid asking things sometimes.

I have a C-Sec scar (keloid) and it is raised and bubble like and I have tried the Bio oil and other creams before. I have a stomach I could have supplied you with eight new boobs! Between belly button and C scar. I would love to remove it!!!!! Can they take a bit of extra tissue and throw it away at the same time??? Instant tummy tuck!

Heidi

louiseg

Hi Again,

Don't be afraid to ask questions!  There is no such thing as a silly one and if you don't ask, you won't learn

I have an eye shaped cut in each breast which is where they did the mastectomy - there is no cut underneath, everything was done through this "eye".  The nipple was removed as part of this eye shaped incision.  After everything is all settled down after surgery (really it is the last thing to be done) the surgeon did the nipple.

I had to wear a crop-top type bra after surgery (and still am now) for about 6 weeks.  This is very comfortable and doesn't push on the scars.

If you already have a C-sec scar they may be able to open that back up (but extend it - the cut goes hip bone to hip bone).  I certainly had more tissue than was needed for the one breast that I had removed and they did a lovely tummy tuck on me   I got rid of all that extra fat and it was the one really positive thing to happen at that time of my life.  They just used what they needed to make the breast.

It is not an easy operation - you need to have a really good, positive frame of mind before you get this type of op done.  After you have a TRAM flap it is very difficult to stand up straight and it can be a bit painful to do this first of all.  You need to work hard at the physio exercises that they give you to do and, if you do, you will have a great outcome.  I wish I could have used my own tissue both times but it wasn't to be.

Louise

Heidihoe

Hi Louise,

I have Rhematoid Arthritis as well and get painful flare up's with the inflamation. Mainly in my right arm. But also in my knees and feet. I do Hydro therapy to try and keep movement going.

With my past 3 C-Sections I felt a lot of pain and they didn't seem to give me enough pain meds. So don't have a good pain threshold.

I'm wondering how I would make it through this type of proceedure?

I don't want to get to the stage where they take my lymph glands under armpit as I'd no doubt end up with Lymphodema like one of my cousins did!

There shouldn't be too much scaring if they just go through the nipple area.

Lots of things sound quite good when I discuss them, not as much horror stories as one's mind could imagine. So good stuff.

Are you reconstructed nipples healed after surgery as you are still wearing compression like top? And if so are you happy with the appearance?

Heidi

louiseg

Hi again Heidi

I probably wouldn't go for a TRAM flap if you don't have a good pain threshold - it is certainly more painful than the Lat Dorsi reconstruction that I had on the other side!  I only needed a couple of Panadol after the Lat Dorsi and had very little pain at all!  You may be lucky and they may be able to do the op without using your muscle.....I'm not sure of the pros and cons but I know that my surgeon uses the muscle to get a better end result, but other surgeons obviously think differently based on what Ree has had done.

You shouldn't need to have any lymph nodes removed unless there is evidence of cancer in the breast.  I only had 5 taken out from the second time and none of them were cancerous.  My risk of lymphodema is fairly low.

My reconstructed nipple is healing beautifully   I am REALLY happy with the result.  You wouldn't know that it wasn't a real one other than the lack of colour at the moment.

Have a good day,

Louise

Heidihoe

Really that sounds fantastic!!!!

What great feedback.

Can you get it coluoured in??

Please explain in simple terms what the

TRAM flap stands for and means ? Spell it out to me.

Had ultrasound today and previous lump couldn't be found?

All Good, nothing in lymphs.

Booked into speak to Familial Cancer Counsellor end May.

Ree

Hiya Girls,

Was just reading through to catch up and nearly wet myself at Heidi's comment "can you get it coloured in?"  Sorry, I'm not laughing at you Heidi, I was laughing because I had a mental picture of my boys sneaking in while I was asleep and using their textas to give me multi-coloured nipples.....ROFL....they have coloured in their pet cat, guinea pig and any poor bugs as well as the neighbours "highly bred very expensive" poodle. Probably the most fun the poor dog has had in years, so not too much of a stretch to imagine me as the next victim.

Too funny.....

Heidihoe

Isn't this good that we can get a laugh!!!!

Being an artist I said it as I thought, can you just paint one on?

I just think the whole process is amazing full-stop.

And to feel good about it all, is just wonderful.

Thanks to advances in science and technology we get good boobs....

yeh.