Single and still dealing with the complications of breast reconstruction and radiation

GemskiGemski Member Posts: 6
edited March 8 in General discussion
Hi I’m seeking insight and any comparative stories from any other women that have suffered from having complications with their reconstruction. After having a reconstruction 12 months ago following 6 months of chemo and 6 weeks of radiation I have just had to have my implant on the radiated breast removed. My reconstruction was purely silicon implant as the surgeon did not use any of my back or stomach tissue. 

In the last 12 months I have had Lymphatic fluid seepage from the right breast as the wound refused to heal completely. This occurred on and off throughout the last year and both me and my surroundings were hoping this would fix itself. Unfortunately in December 2018 I got an infection in the breast which has been treated with antibiotics. The infection came on very quickly and caused 50-100 mls of fluid to seep from my breast. This eventually stopped after 2 weeks. However a month later and the process repeated itself. The solution that has been presented to me to fix this is to remove the implant for 3 months. Clean the area to rid the infection. Which I underwent 3 days ago. 

The next stage is another surgery in 3 months to do a last dorsi tranplant to the radiated area to insert healthy tissue and replace the implant. The scar should then heal properly as it will be non-radiated skin. I am to,d this op will take 6-8 weeks to recover. So after 2 years of going through what I thought was my breast cancer journey I now have another 6 months where it is leading the direction of my life, stopping me from working, costing me money I don’t have and pausing any progress in my life. 

I have been told by the doctors and nurses that this is all very common. Is it? I’ve not met anyone who has had this happen to them. 
Im 48 yrs old. I’m single. I have no children. I also have vaginal atrophy and absolutely no sex drive. I’m getting very tired of the uphill battle and getting tired of being told to be strong. This will be over soon and I’ll get through it. I’m sick of it and have also had to deal with a lot of grief in the last 10 yrs. My breast cancer journey started In 2008 when I was only 37. I haven’t had any support groups to help or relate to throughout this. I have had no-one my age to compare my journey or health experiences with. I’ve not had a breast care nurse to support me through any of it either. I have been the captain of my ship the whole way through this and I feel like it’s sinking.

When I received the BCNS journal when this all began I saw there was only 2 pages dedicated to single people. The rest of the book was dedicated to families and their support group. As a single person I feel isolated and left to the side. its much harder to find a purpose to wade through all of this when you are alone. Of course we have friends and a social circle but as I’m constantly reminded it’s not the same as having a husband or children to brighten your day. The commitment is not the same.

Im looking for help. Can anyone out there please relate to any of my story, my experiences both emotionally and physically. I was advised to look on here and give this a go so I really hope I’m not wasting my time. 

Comments

  • kmakmkmakm MelbourneMember Posts: 7,503
    edited March 7
    Dearest Gemski, welcome to the forum. What a terrible run of it you've had! I'm so sorry.

    We have all sorts here, and we also have a group for single people going through breast cancer. Click on the groups button and apply to join. There's also the Choosing Breast Reconstruction group which you may like to join. There are photo stories of lat dorsi recons there. But we also have lots of singles on the main forum and I'm sure someone will be along soon to help. Big hug, K xox
  • kmakmkmakm MelbourneMember Posts: 7,503
    @Giovanna_BCNA @Gemski would like to hear from our single members. Perhaps a change of title would help attract some notice? Something like 'Single and still dealing with BC after two years'?
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 104
    Hullo @Gemski so very sorry to hear this, what an awful time you have had. I can feel your despair and frustration and anger and you are right to express all of these and more. Mental and emotional issues are almost worse than the physical horrors.  I had a straight mastectomy and no reconstruction or implants etc but if you join the reconstruction  group there will be support understanding and advice there. Meanwhile thinking of you and sending hugs.
  • lrb_03lrb_03 Member Posts: 1,156
    edited March 7
    Hi @Gemski. I'm nearly 4 years out from diagnosis, a little over 3years since finishing active treatment. I was 49 at diagnosis,  single with no kids, like you. Happy for you to pm me if you like. 
    There isn't a group specifically around being single going through this, but there is one around being childless going through BC. It's a closed group and very supportive.

    Having said all that, I do believe that as single women, we do have yet another perspective on going through cancer, because as much as (as you say) our family and frinds are supportive, at the end of the day, we're still alone.
    And before I  lose my head for such a comment, I do recognise that that isn't always a bad thing
  • GemskiGemski Member Posts: 6
    Thank you both I’ll check out the single support group. Many thanks also for,your kind words. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    @gemski How difficult it must have been trying to go through this crap by yourself.  This group is fabulous for that extra support from those who get it.  As another option, if you put the general region you live in (you can keep it as wide as you need to for privacy), on your profile, other forum users may be able to suggest support groups near you.  
  • MvBMvB Member Posts: 35
    Hey @Gemski so sorry to hear all you have been going through.  Radiation definitely does cause issues with skin healing, whether you are dealing with reconstructions or post radiation mastectomy with no reconstruction or further surgery for local recurrences.  I wonder if you have thought of no reconstruction - “going flat” as they now call it.  I’ve been flat for 15 years and have worn a prosthesis.  I have been happy with that. I’ve also recently had a recurrence in the scar tissue of the mastectomy and was offered lattismus dorsi reconstruction as well as diep.  I was very clear though that I wanted to stay flat and had a thigh flap transplant. I had a week in hospital & 3 weeks home. Back at work etc after that. I appreciate that you may prefer to still have a reconstruction.  But might be something to consider as an alternative.  Sending soft hugs
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,162
    Hello @Gemski
    Great that you have found the online forum and thank you for sharing your experience.   Its been a long and tough road for you and understandably you are feeling frustrated.  Its a great supportive environment and Im sure there will be other members who will respond to this conversation.   I have edited the title as suggested.  Please dont hesitate to call our helpline on 1800 500 258 if you would like to speak with a cancer nurse for information and or support.  Take care of you
  • KarynJKarynJ SE QldMember Posts: 106
    Hi @Gemski. I'm so very sorry for all the distress and horrible experiences you've been through and still have to endure. I was 45 single and childless at time of diagnosis last year. Still single and had a hysterectomy so still childless 😯.

    I haven't had the same physical issues but can relate on an emotional level. If you want to pm me please feel free. Lack of emotional support is a huge problem I deal with day in day out. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,696
    @Gemski ;
    There's also another group on here that you may consider

    https://onlinenetwork.bcna.org.au/group/19-breast-cancer-childlessness-and-us

    Take care
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