So I am coming to the end finally of my chemo treatment! Just had my second to last one yesterday. It feels like an eternity!
Now, of course, my thoughts are turning to reconstructive options and whether I should get a preventative mastectomy to the other side.
I have a strong family history of breast cancer on my mother's side - my mother, my grandmother, and 3 great aunts. However, surprisingly, I do no carry the BRCA 1 or BRCA 2 gene. I have had DCIS and Invasive Ductal Carcinoma which led to a mastectomy of the right breast (at age 25, last year), and now I don't know what to do about the other side?!! I have had childhood leukemia as well (although I did not have any radiation, just chemo as a 2 yr old). This would suggest that I do have some sort of predisposition for cancer. The thought of ever having to go through this again is just unfathomable, so I would say the fear is leading me to be inclined to get a prophylactic mastectomy to the other side.
So I'm writing this blog to get some of your thoughts on both preventative mastectomies and types of reconstruction. Is any one really happy with their decisions or any regrets? Any advice for me would be greatly appreciated. As I am 25 and never had children, i don't have a lot of extra fat, so most likely I will get silicone implant reconstruction.
Also, If anyone has any great websites to refer me to that would be great. I've been looking for photos of reconstructions online but they seem to be difficult to find.
Comments
reconstruction
Dear Tanya,
WOW! I could not imagine how you are feeling... You have been thru so much at such a young age... but anyway...
I'm 28 and never had children. In the process of having my reconstruction done on my left breast after my mastecomy this month. The only option I had was the silicone implant. So far I am happy with the silicone option, it is alot of work with how they do it over time... they put the expander in and gradually blow it up over a couple of months to stretch the skin then take the expander out and put the implant in and u have to change the implant like every 10-15yrs... With your other breast if you get the implant in the right one you'll most likely get one in the left (even if u keep that breast) because we are young and breasts age and u want your breasts looking the same, they do recommend u get them in both.
The pain with the reconstruction im doing is livable. i just take regular panadol and nurofen. but u do have restrictions on what u can physically do why the plastic surgeons get the look right.
Hope this helps, and if u have any certain questions just inbox me :)
I didnt research anything on the net, my plastic surgeon gave me all the info I needed.
Merylee
Latissimus dorsi flap reconstruction
I had a right breast mastectomy and reconstruction in January with the flap taken from the latissimus dorsi muscle under my shoulder blade. It went fantastically well. There is a tissue expander in there at the moment. I haven't had any additional saline pumped in yet as I want to lose weight and don't want to end up lopsided if my left breast shrinks with the weight loss. They are even at the moment and the right looks very natural. I had no pain after the surgery but a lot of swelling on my right side where the muscle was taken and couldn't sleep on that side for weeks. I developed a eggplant-size lump of fluid which my husband and I called Junior, but that gradually diminished.
Three months after surgery there is a little tightness around the incision, and under the armpit where I guess the expander port is, but that doesn't stop me exercising. I'm going to start getting back into weight lifting very soon.
I'm not sure how I feel about silicone vs saline implants. I had hoped to avoid an implant at all but that's unlikley. I guess what I've got at the moment (the tissue expander) is a bag with saline and it looks great, so maybe saline is the way to go. I can see myself bothering Google about this soon as I look into researching the pros and cons.
I look a bit like an alien at the moment because I've only got one nipple and areola so am looking forward to the reconstruction being finished at about the end of the year. I have no regrets at all about the choices I made - both having the back flap procedure and having a reconstruction at all. I looked into the tummy flap procedure but didn't want to compromise my tummy muscles because I have a history of back problems.
All the best with your decision, Helen.
lat dorsi
Hi Helen,
I was wondering whether you had the lat dorsi procedure because of previous radiation to the breast, or was it to achieve a more natural look and feel than just using implants?
thanks,
Merryl
Hi Merryl
I haven't had radiation, thank goodness.
I'm not keen on breast implants, saline or silicone, and having the lat dorsi flap means I will only need a small implant when the reconstruction is finished. Honestly, my thoughts were not so much about the look and feel of the reconstruction but not wanting to live the rest of my life with a honking great implant in my chest. So, the only real choices I felt I had were the tummy flap and the lat dorsi flap. As I have had back problems in the past, I didn't want to compromise the strength of my core abdominal muscles, so was very happy to have the lat dorsi reconstruction. My breast surgeon was not keen on the tummy tuck reconstruction anyway and felt the lat dorsi procedure was a better option for me.
The reconstruction is still as it was after the operation in January. It hasn't had any more saline pumped into the tissue expander and looks virtually identical to the other side. I am certain that no-one could tell it wasn't a natural breast - apart from the missing bits.
All the best,
Helen.
If I may
Why wasn't your Dr happy with just the tummy being used for replacement tissue for the breast??
Hullo Heidi
My breast surgeon felt that the back flap would give me a better result and he agreed with my concerns about not weakening my tummy muscles.
Helen
hey hey, i was 26 when i had a masectomy and reconstruction at the same time, i decicded to have both off as i have lumpy and large breast and cause of the %%% of it coming back regarding age,tumor agression etc etc....i guess at the time it was a pretty big call my oncologist thought i was too young to have both off but my surgeon was all for it.... I was single and didnt have kids and i that he worried about that, but at the time after just being through chemo which i didnt really bode well i really didnt care what i looked like and what people thought off me hahaha i already had put 20 kgs on from chemo... but it was the best choice i have ever made.... and i just got my nipples tattoed on too!!!.... its like i have 18 year boobs never wear a bra, my only issues is the scars im one of the unlucky ones who getting keyloyd scarring!!! but if the scars werent there you wouldnt even beable to tell and the tattooing is incredable..... now to my reconstuction i had something completly different and only one surgeon does it in australia she just came back from studying this technique in the uk for 6 months.... the whole double masectomy and reconstruction plus port removal...total 3.5 hours under.... basically she pulls the abdomal muscle up and puts the implants behind them.. and thats it.....wake up with new boobs... the only thing i notice is on the rib cage my bones near my beast dont have much coverage a little thinner as its been stretched but then if i was skinny it would prob be like that anyways....hahah If you need to chat feel free to call me anytime or message, good luck with ur descison making.... Megs xx
Wow so much info!
Thank you Megs for all that info it helps people like me to get my head around what proceedures are out there and how people react to these, it really educates me.
I'm glad you threw in fat and skinny effecting different op's as we arn't all small.
I was very thin and after kids put on weight and after steroids put on more weight and wondered how it would be for me.
Tattooing is good is great to hear.
I also scar!
Much appreciated.
Heidi
Hi Meg! I'm doing well. Feeling back to normal now after my 5th chemo treatment last week. I have a question which you might be able to answer -- do doctors still want you to be on tamoxifen for 5 yrs if you've had a double mastectomy? Is there no need to take tamoxifen if all your breast tissue is gone? How is taking Tamoxifen?
Tamoxifen
Hi Tanya
I have had two mastectomies - one with BC in 2003 and then the other with BC last year. I am now on Tamoxifen for 5 yrs. The tamoxifen reduces your oestrogen levels and as my tumours were oestrogen positive I still need to have it even though I have no breast tissue left. I think it reduces the chance of further tumours in other parts of my body, especially my ovaries (Ovarian cancer is linked to Breast Cancer, in case you weren't aware).
I am not having any adverse affects from taking Tamoxifen other than heavy periods. This I am handling by taking Trans-something or other acid which reduces the bleeding (I can't remember off-hand what it is called! LOL)
Hope this helps,
Louise x
my number would help 0437299338!!!! good luck hun call me anytime xx
Hey Tanya,
I had mine both off last year at time of diagnosis, everyone is different but for me getting rid of them was the right choice. I did not have reconstruction straight away as I was not ready, I am nearly finished chemo and am now finding a plastic surgeon I am happy with. My suggestion is to start researching surgeons, find one you trust and go with what they think is best re what type of reconstruction you should have for instance if you have radiation they won't do a straight silicone implant on the radiated side due to the skin changes.
Goodluck with everything x
Another question
There are some great replies here. Can I ask a question about the implant reconstructions? I had a skin sparing mastectomy and insertion of tissue expander about 9 weeks ago. I am currently having chemo but starting to think about my reconstruction and also my other breast. With my surgery, the skin expander was inserted under my chest muscle - I still have another fill or two until it is up to the same size as my other breast. I am wondering though whether a reconstructed breast using an implant will feel the same as I do now? I have a rock hard "melon" on my chest - there is no give whatsover - I have had three children so my other breast is rather "droopy" anyway but I am struggling with this sensation and wonder if I should go for a different option to get more of a "natural" feel. I haven't gone down the path of plastic surgeons yet - just early days questions. Thanks
Hi MandyMoo
My reconstruction that I had in 2003 was a TRAM flap and that feels nice and natural but the one that I had last year/this year feels very firm (just like the expander did before I had the permanent prosthesis put in). If I had had the choice I would have used my own tissue again with another TRAM but didn't have the tummy to do it this time! Getting rid of the baby belly the first time was also an added benefit although the TRAM operation is a lot harder than the lat dorsi/tissue expander reconstruction. Healing also takes a lot longer.
any questions, please feel free to ask
Louise x
thanks
Thanks Louise - that's exactly what I was wondering. If you don't mind me asking do you have a different type of recon an each side? How much tissue do you need for the TRAM flap? I had a tissue sparing Mastectomy so I have the skin there which the saline expander currently. I just don't like the hardness - it looks OK and I don't need to wear a bra on that side (pity the other one is so saggy ;-)) but the rockmelon feel is uncomfortable.
I was a little put off the TRAM flap because of how involved the surgery is too. Early days though and you have given me many more questions for the surgeons!
Thankyou
Amanda
I guess if I had had a double mastectomy in 2003 I would have elected to have two smaller breasts made from my "baby belly" rather than having the Lat Dorsi type of reconstruction. At the time I wasn't ready to make the decision to have my second breast off (I was 35yrs old). I wish I had and then I wouldn't have had to go through it all again - mastectomy and chemo this time too. Its all very well in hindsight though and I never imagined having to go through it twice! I think I was really unlucky.
I don't think you need too much tissue for the TRAM. My TRAM was actually delayed by 5 months as I had an anaphylactic reaction to the blue dye that they used to track the lymphatic drainage with my sentinel node biopsy and ended up in ICU - that sort of cut short the operation! I didn't have a great deal of loose skin where the breast was taken from. They used some skin from my stomach as part of the reconstruction.
If there is ever any chance of you having your other breast off as well then its probably a good idea to decide before you have your reconstruction - at least that way you could have both breasts reconstructed at the same time and make them even. If you have enough of a "baby belly" or stomach fat then a TRAM would be my preference, even though it is a bigger op and the recovery time is quite a bit longer. The breasts definitely feel more natural. I am not disappointed with the result that I got from the Lat Dorsi op but it definitely doesn't feel normal. Both breasts are more perky than they were before and both sit about the same. Whether the TRAM one droops over time, I guess I'll have to wait and see (although it hasn't over the past 7 yrs!).
I guess if I was you I would ask the surgeons whether a TRAM is possible based on your body shape etc. At least then you will have the information to make the right decision for you....
Louise x
Hi Tanya, How are you? We miss you and hope all is well. My suggestion is you go to a surgeon and get all the facts. I went and talked Eddie Cheng at Wesley and he was very good. He also has photos of 3 different types of reconstructions and he will advise what is best for your age and body type. I still wish I had removed both breasts but I am a lot older than you, and I still may even go down that road.
Anyway, all the best and we hope to see you again soon,
Lynne
Hey Heidi ho!! thanks for the feedback, i know when i was diagnosed i was trying to think of the postives and i was like least ill be skinny well only to find out breast cancer is one of the only cancer you put weight on!!! hahaha just our luck! If you have any furthur question regarding anything please ask as im an open book, i find sharing is knowledge and knowledge is comforting and resurring if thats makes sense??? My surgeon regulary rings me up and ask if i could do a show and tell for a patient lol... i feel if i had the opputunity to of met someone who had the procedure and could of looked at the girls and asked questions then i wouldnt of found it so daunting... i guess thats why i used to and still go to the groups as i found i got more info through them then i did my oncologist and now i can be there for the the women now going through this journey,and thats whats so fantastic about this website its like a huge group but i can be really lazy and not leave my house! hahah i hope you are travelling well? take care
Megs xx
Thanks Megs
Yes you are right it is so much better to know the truth, than to worry and only think up the worst!
I'm the sort to want to know everything and that calms me down alittle.
Good on you for helping others with your show and tell as you put it. I believe if someone can do that for others not yet there, but scared and unsure then that is fabulous.
I'm not doing so well at the moment... my Mum's ill and getting worse with PD and I haven't heard from my cousin yet and I'm stressed! Big time. I feel like I already know I have this %^(*&()*(&%^%$@# GENE, i JUST KNOW IT... and I'm not scared of loosing bits down stairs but a bit scared of the top half!
HH
great feedback!
Thank you all for such great feedback! It really helps to get more information and opinions from people who have gone through this all.
Megs- I may give you a call to talk about your reconstruction!
Lynn- Thanks for stopping by my blog and saying hi! I hope you're doing well and sorting out your reconstruction too!
Thanks again everyone! xo
2nd mastectomy
I am thinking about having my other breast removed, I have not been diagnosed with recurrence of my cancer but I am worried about getting it again in the other breast, I have a history of fibronomas & cysts and just dont want to worry all the time. I am not interested at the moment in having reconstruction done as I am 52 & do not want to lose to much time off work. Does anyone know if you can get it done on Medicar,e I have heard that you have to have BRAC gene, and I do not know if I have been tested for this. Also do most private health schemes cover you for one.
Thanks