Forum Discussion

shmoo's avatar
shmoo
Member
12 years ago

Shmoo

I am new to this group and am now 4 weeks post op after having a bilateral mastectomy.  I was diagnosed 8 weeks ago with a 9mm IDC and a DCIS in the one breast. After the initial shock I spent the next 4 weeks crying and trying to get my head around this.  My world fell apart as did my husband's!  I am 57 years old and am the first person in my family to be diagnosed with breast cancer. 

After being advised that I would need a mastectomy I decided to have the other breast removed as well. This was due to the fact that my breast tissue was extremely dense and lumpy and it was difficult to detect my cancers without an MRI this time around.  Fortunately I had no lymph node involvement and therefore do not require any chemotherapy, radiotherapy or hormone medication. 

During my double mastectomy I had bilateral expanders placed beneath the chest wall muscles and am looking forward to the exchange in 8 weeks time.  The expanders have given me a lot of grief so far.  I had 150ml of saline injected into them at the time of the mastectomy and will commence on 3 weeks of saline fills in 2 weeks time.  I can not imagine the discomfort I will experience from that as it is pretty unbearable at the moment.

Fortunately the nerve pain and the skin sensitivity have improved a little, though have a cording issue under one armpit, running down to the elbow - a physio will be attending to that tomorrow! 

I am wondering if anyone can give me some information on their journey with expanders and if there is anything they have found to help with the dreadful tightness.  I am finding it difficult to find a comfortable way to sleep as well.  Also curious to hear what I will feel like once the exchange has occured.  Does the tightness immediately disappear or will I still feel much the same until the muscle totally relaxes?  I can't wait for the exchange as can not imagine it would be any worst than what I am experiencing at the moment.

I look forward to hearing about other's experiences with reconstruction surgery.

dcis

7 Replies

  • shmoo's avatar
    shmoo
    Member
    12 years ago

    Hi,

    I am feeling so much better and felt relief from the expanders by about week 6. Though still very tight I am able to cope with them and can lay flat in bed and even lay on my side without too much discomfort.  

    I have my exchange next week and it can't come soon enough.

    I am pleased yours all went smoothly and that you are now on the road to normality!

    All the best.

     

  • Sun_shiny_day's avatar
    Sun_shiny_day
    Member
    12 years ago
    Hi Shmoo. It's about 5 weeks since your last post here. How are you going now? I had expanders inserted at the time of bilateral mastectomies. It was a rough trot, extremely tight and very difficult to sleep and move in bed, even get into and out of bed! It does all pass though. I've had the exchange to implants which is MUCH easier to recover from and they are a far better shape and more natural looking and softer. My hubby says they feel natural when I hug him. It's been a tough time for you, first you are rocked by the diagnosis then the hideous treatment to address it. It really is profoundly distressing.
  • Chorsell's avatar
    Chorsell
    Member
    12 years ago
    I have the rolls on the left side - so know exactly what you mean.. That was my "good" side and that expander sits more to the side as well... My surgeon explained that it was because of extra skin that side was bigger - I think the right side was about half the size of the left following lumpectomy. He seemed confident that he could tidy up most of it at the time of exchange... When I say normal I mean normal for now... I don't think you ever go back to what you were before... The tightness is always there but I guess you just get used to it an manage - normal for me means no pain killers an being able to do things for myself. Mastectomy and expanders is the big surgery ... If we get through that anything else is a walk in the park... Exchange, nipples, and revisions seem minor in comparison... I guess it's a personal choice in regard to how far you go and what you can cope with. My exchange surgery will hopefully be early November... All the best Chris
  • shmoo's avatar
    shmoo
    Member
    12 years ago

    Wishing you all the best for your expander surgery.  I didnt realise there was tightness associated with mastectomy only - so I probably have a double whammy! 

    I had also thought about hydrotherapy and will discuss this further with my surgeon.  I will need to wait until all the surgery site is clean I assume as don't wish to pick up any nasties at the moment.

    Any questions on expanders during your journey then just let me know!

     

  • SusanF's avatar
    SusanF
    Member
    12 years ago
    My choice was the same as yours, both off despite cancer in only one breast. I was also first in my family, I'm 56. I am about to proceed with expanders. My research shows that expanders inserted at time of mastectomy to be more painful but my research does not say why. I suspect its all too much, but then I'm a cattle farmer who would not treat her cows this way as I know their bodies would not cope. I do think it will get better but you need to keep on with your team, call your anaesthesiologist to discuss the pain. The tight feeling hasn't left me in 20 months, it may never. Physio will help you enormously as will remedial massage and hydro therapy, keep moving. It will get better, you have come to the right place. Join the breast reconstruction group you will find so much info there as I have. See you there chin up, susan
  • shmoo's avatar
    shmoo
    Member
    12 years ago

    Hi Chris,

    Thanks for your reply!  Great to hear from someone going through the same thing as me.  I also had a bilateral skin sparing mastectomy like you.  I am not sure if you are experiencing the same rolls of skin and tissue left like a tail under each armpit??  It is rather disconcerting and hope that it will all be removed during the exchange.  Though when I spoke to the Nurse last week (my plastic surgeon was on leave) she indicated that I may need extra surgery to remove that after the nipple reconstruction.  The thought of even more surgery is pretty horrendous!!

    Thanks for filling me in on what to expect with each fill.  I have elected to go smaller and am pleased I will end up with a C cup - a good option as have always struggled with double D's.  From memory I think the surgeon said he would fill to about 350ml. 

    I was interested to read that you felt almost normal at the 2 week mark.  I have never felt normal in the 4 weeks post op.  The tightness has not subsided one iota and some days are worst than others.  So am not sure how much worst it could possibly get over the weeks of saline fills.

    When will you be having your exchange surgery? 

    Hope your recovery goes smoothly.

    Hugs

    Susie

     

     

  • Chorsell's avatar
    Chorsell
    Member
    12 years ago
    Hi Shmoo I too had bilateral mastectomy and expanders... I am currently waiting for my exchange surgery. I found for ther most part alternating panadol and nurofen every 2 hours kept the pain away... I found after each top up the pain peaked at around 12 hours after and then gradually reduced over 3-4 days. Trying to keep mobile and attempt normal activity as you can manage helped and once they "dropped" the pain eased. As far as sleeping went it was primarily on my back at about a 45 degree angle with about 4 pillows.. As the pain eased I could get more on my side by arranging my pillows differently. My last fill was the worst, and the fuller you get the more they feel like concrete blocks :-) Having said all that I think everyone manages differently as there are so many variables... They tell me exchange is a huge relief... I can't wait! I am 52... I had bilateral skin sparing mastectomy with expanders... And started with 150 mil.. And had 100mil top ups roughly every 2-3 weeks the last one being 70 mil... I am now at a total of 620 mil each side!!! I am sure if you find your top ups too painful you could discuss with your dr the option of smaller amounts each time... The thing I found frustrating was by the two week mark I was feeling almost normal and then it was like I went back to square one after each top up... Ask any questions you want if you need more info Hugs Chris