Single Masectomy

Leanne75Leanne75 Member Posts: 5
Hello, I joined this group a few weeks ago, but this is my first time posting. I was diagnosed with breast cancer of my left breast in September. I had breast conserving surgery and they removed 40mm of invasive cancer, plus my margins had several DCIS and one out of two nodes had cancer. I went back for surgery in October for a single mastectomy and axillary clearance. I have had MRI’s, CT’s and Bone Scans and my surgeon is confident that it isn’t in my right breast or anywhere else. I have already had my first of four chemo cycles, CT.  Are there any other women out there who have had a single mastectomy?  I am a public health patient, and initially I was not intending on having reconstruction, however I am struggling with trying to make my breasts look the same under clothes. At the moment I am only using the Berlei Bra form and one which my mum knitted me (I use the knitted one mostly), and will get fitted for a prosthesis early next year.  I am just finding it really uncomfortable, and would love to hear from others who are similar to me. Thank you xx

Comments

  • TonyaMTonyaM Member Posts: 2,472
    Hi Leanne, I’m sorry to hear you’ve started the crap bc journey but welcome to this network.A mastectomy takes abit of getting used to.I had one 7 years ago and this was my second bout of bc. I’d had a lumpectomy(left breast)and full node clearance and radiation back in 2003 but it came back in the same spot in 2010. I got fitted for a prosthesis about 6 wks post surgery and it was so much better. It looks natural,feels comfortable and I can wear tighter t shirts. Up till then,I wore loose shirts with the soft form as I felt abit self conscious.The soft form would sometimes gravitate to the real breast as it’s not weighted.Wearing a scarf over your top can hide a lot.I’ve had to shop for clothes with higher necklines or ‘doctor’ them by sewing fake lace cami’s underneath.I also doctor my bathers.I don’t do naked in the bedroom but that’s just me.We are all different and there’s no right or wrong way when it comes to adjusting to a mastectomy.Is there any possibility of getting fitted for a prosthesis before Christmas?
    Tonya xx
  • AfraserAfraser MelbourneMember Posts: 988
    Hi Leanne
    i had a left mastectomy five years ago and due to a persistent seroma, had a soft pad for nearly 12 months, so I know how you feel. Perpetual adjustment is a thorough pain. A proper prosthesis, shape, weight and touch much closer to the real thing, made all the difference and I have neither looked back nor felt the need for a reconstruction. My prosthesis cost $400, most refundable and needs replacement about every two years. I had no need to change any of my clothes - I didn't wear plunging necklines but my surgeon kindly left me with just enough for a hint of cleavage! I am fine for beach or pools, have stripped off in shared change rooms, although it took a little time to get fully comfortable naked. Best wishes.
  • nikkidnikkid Member Posts: 734
    Hi Leanne, welcome/. There are loads of us in the same boat - for reconstruction options and advice you can request to join the closed discussion group on Breast reconstruction. http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,631
    Small breasted and lost the left one two years ago. I wear no bra or prosthesis. No one seems to notice any way but clothes loose with a pocket on the left side for my comb and note book and I look pretty level. :)
  • KristenKristen Member Posts: 19

    That's great Leanne 75 that it hasn't spread. you've hit the jackpot by only having early stage breast cancer- I know that sounds weird but its true.  I wish I really understood that when I was diagnosed- 10 years ago now, all that I have learnt I would have not been so stressed back then. masectomy/chemo /rad is tough. But at least HUGE survival rates stage 3.catch it early . have the treatment. that's the message we have to spread.

    yep it feels weird for ages. you keep thinking you have fluid but it just  new shapes of muscles and ribs and new  armpit shape and chest that makes bras feel weird.but once I had time to accept that  new shape and new feelings and got a proper prosthesis and bras ( Lily Bliss To You)   I was much more confident. Learnt to wear camisoles and scarves to cover lack of clevage. More surgery not for me. I am happy to pop my plastic boob in and get on with my day.Some people think they are heavy - but they are actually realistic and help balance things for you back/shoulder. its just not a bag of flesh attached to your chest- but a cleverly designed plastic boob in a pocket. I love underwires too.

    hope you can save up to cash flow the rebate and get yourself some more comfortable bras. takes a well trained fitter. Don't buy things if your not sure.Just remember anxiety also makes it feel uncomfortable ( I know, I struggle with that)  - we have to look after our whole self- hard isn't it. 

    good luck.your not alone.

  • Leanne75Leanne75 Member Posts: 5
    Thank you so much ladies for your comments. I had my surgery 5 weeks ago, so I will make an appointment for a prosthesis in a couple of weeks. I try to buy button up shirts with pockets, I feel more confident wearing them. I think the prosthesis will make a huge difference. My right boob likes to head south/west lol, where as the form just sits straight! It has been a great comfort to hear what you are experiencing. There is absolutely no history of breast cancer in my family, and I don’t know of any friends or co-workers who have had breast cancer either. Thank goodness for networks like this one xx
  • primekprimek Broken HillMember Posts: 3,308
    edited November 29
    Hey @Leanne76...you could try a sock with grains in it to help with weight while you wait. (Can you remember bean bag frogs...or even a wheat bag...think of the weight)  I had heard of someone who did this as found the prosthesis too heavy. I guess you could put inside the breast form (with stuffing removed) to give you a little more weight and make it a bit more comfy until you are fitted. Just a thought. Kath x
  • Leanne75Leanne75 Member Posts: 5
    Hi Kath, that would probably help. My breast form needs a bit of weight for gravity to work on it! Thanks x
  • melclaritymelclarity Member Posts: 2,465
    Hi @Leanne75 welcome!

    There is a brilliant woman in Melbourne who specializes in bras for mastectomy and reconstruction. She used to be a Nurse and now does this, she is amazing and has all sorts of prosthesis from what I remember, her bra fittings are fantastic.

    I had a single mastectomy in February but with immediate diep flap reconstruction, a year after treatment due to not wanting to risk a 3rd recurrence. So I waited to go and get fitted, now I feel so much better wearing proper bras. She does orders by skype even lol. 

    Hugs Melinda xo
  • Leanne75Leanne75 Member Posts: 5
    Thanks Melinda, I’m sure I will feel for comfortable and confident once I am wearing a prosthesis and the correct bra x
  • UnicornkissesUnicornkisses Central CoastMember Posts: 384
    Hi @Leanne75 and welcome.
    I too had breast conserving surgery first followed by chemo then single mastectomy and Lymphnode clearance, due to multi focal and multi centric cancer pathology after surgery, and then radiation.
    I am still wearing my Berlei soft form but at the Beast Care nurses advice, I added some rice in the bottom of it to keep it down (I sewed a sausage shape holder out of polar fleece to hold the rice) , and removed some stuffing to make it the right size.
    It does move a little in the soft Best and Less bras with the removable padding that I am using with it, but it is mostly very comfortable.
    I just worry a bit though that the soft bra doesn't give my remaining side enough support, and am not sure if by wearing the soft form on one side is affecting my back at all as the weight is uneven.
    I have yet to see my usual chiropractor to explore that issue.

    I have a light weight prosthesis but have yet to find a bra that doesn't dig into the areas that I had the lymph nodes removed from, as they are still swollen after radiation.
    I am seeing the lymphodema Occupational Therapist at my public hospital and they have suggested taping the areas, followed by a Lymphodema pressure bra. I am seeing them in two weeks to have that done and fitted.
    The prosthesis itself is very comfortable to wear, which surprised me, it is just finding bras that are comfortable for me all day. The soft ones from Best and Less are not strong enough to hold the prosthesis up enough.

    You can get self adhesive prosthesis that stick on your skin, they are a little more expensive and require special washing but allow you to wear normal bras, you might see if that suits you when the time comes.
    I have adjusted to the look of the surgery side, but it does make some clothes sit lopsided if you don't wear a prosthesis of some sort, especially camisoles that I wear to bed, the shoulder strap on my remaining side keeps falling off. And I still go to cup the breast on the surgery side while washing in the shower, and get a slight jar of realisation when it isn't there, I guess that will wear off over time.

    I am planning on reconstruction on my Plastic Surgeon's public list next year.
    I will have DIEP flap reconstruction.
    At present I am only considering a single breast reconstruction, but as I will only get one go at it, I am going to have another MRI before surgery to ensure that the remaining breast is cancer free.
    Mammograms and multiple ultrasounds with multiple Doctors, after my diagnosis failed to identify the second 2.2cm lump in another quarter of my breast, and the DCIS near the main tumour, so I have no faith at all in mammograms or ultrasounds identifying cancer in my breasts.
    My surgeon is certain that my left breast is clear - I also had an MRI before mastectomy and in the first surgery I had a bilateral reduction removing 150g of breast tissue from my remaining breast which was all clear of cancer in the pathology - and my Oncologist is sure that chemo and the Aromatase Inhibitors I am on should ensure that it is clear too.
    But it is hard to take the risk.

    There are challenges, aren't there?
    I hope some of the tips people have given you here help you with your problems.




  • JasiB1JasiB1 Member Posts: 7
    Hi Leanne75. I had a single mastectomy 4 weeks ago and have been wearing the Berlei Bra with the prosthetic which was included in my journey kit. Sometimes I wear a camisole with a shelf bra which is quite comfortable.  Sometimes I just wear a shirt with the cami, but stuff a tissue in the shirt pocket.  
    Im going to get fitted for a proper prosthesis when I reach 6 weeks post surgery.
    I'm planning on a reconstruction - hopefully sometime within the next 12 months.  I've found the 'choosing Breast reconstruction' group really helpful and informative. 
    Hooe this helps. 
    Jan :)
  • MKitty68MKitty68 Member Posts: 214
    Hi Leanne, you're definitely not alone on this journey. 
    I had a single skin & nipple sparing mastectomy in May this year, I've finished chemo, almost finished radiation. I'm still using the soft breast form as it's comfortable & also as I don't have the funds to buy the prosthetic yet. I also wanted to wait until the swelling in my 'flat tyre' settles down after rads before I pay out so much money on a prosthetic as I want to make sure it's the right size straight up as I don't want to be lopsided LOL. 
    Medicare and my health fund will refund most of it, but I still need to have it in the first instance. 
  • Leanne75Leanne75 Member Posts: 5
    Hi @Unicornkisses, thank you for your reply. I haven’t heard of the Lymphoedema pressure bra, I will have to look into that. I too am constantly thinking that my right breast is also at risk, as the mri scans also missed several DCIS which were found in my left breast following my breast conserving surgery. I just have to trust my team of specialist! XX 
  • mum2jjmum2jj Member Posts: 2,992
    Hi @Leanne75, I have had a reconstruction, but did live with one breast for two years before that. The proper, weighted prosthesis will make a world of difference if it is fitted correctly. You honestly can’t tell the difference. I have heard of people putting a coin in the knitted one to keep it weighted. I also found the cheap ah type bra you get at Kmart with the molded inserts really comfy and very cheap. 
    As others have already said, when and if you are ready, the choosing breast reconstruction group are all here to help with your queries. 
    Good luck. 
    Paula. 
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