Reconstruction delayed and struggling

outnumberedx4

So my DMX couldn’t wait but my reconstruction has been shelved until further notice. I also still need to start, finish, and then heal from radiation before I can approach reconstruction.

It’s such a mindf*** right now. Not to mention I had to do it all alone because the hospital wouldn’t allow visitors, so my husband couldn’t be there with m. I’m only 30. I was diagnosed the day before my 30th birthday. And now, I’m left totally flat against my will. It’s bad enough that I struggled with being bald. Now I’m struggling with my body altogether.

I know many women are flat and beautiful and happy. But this is not what I wanted for myself. I’m so heartbroken.

Sunshine99

Outnumbered, I am so sorry. This is a really sucky time. I'm sorry I don't have the perfect response to make everything better...

LiveLoveLaugh2020

I am so sorry that you are going through this. You have every right to be upset and vent. I can't even imagine going through treatment and surgery during a time like this.

My thoughts and prayers are with all of you. I hope you start to feel better soon. If you need someone to talk to feel free to PM me.

Laurencl

outnumbered

I get it. Had a mastectomy 8/8/19. I have a TE , which is uncomfortable. Reconstruction should be happening about now....but now who knows. I had a unilateral and I hate the way I look. I’m right there with you

OnlyGirlof5

Outnumbered, I am sorry you're going through this. If it helps, many of us are in the same boat. It is frustrating, and if you are like me, I feel like our care - all the way through to the end - is essential and deserves the medical community's attention. Breast cancer invaded our lives, and will forever live with the fear of its recurrence regardless of our treatment. It's a life sentence, and I feel we deserve better. All of this is so very unfair.

Rah2464

Outnumbered you definitely didn't deserve this, and I am so sorry this has happened to you. Peace love and prayers to you for your emotional and physical healing. Rant here all you need to do, we get it.

toria1212

outnumberedx4

I'm so sorry for the struggles created by this dang virus. I was so anxious last night thinking about a possible delay to my May surgery. Sending you ((( hugs))) and hope this morning. I hope your day is blessed. xx

Moderators

Dear outnumbered, we're so sorry you have to be here under this circumstances and at such young age, but glad you have found this lovely community to share and vent, a place for great support and information.

Besides this one you started, there are many other threads where you'll find lots of good advice too. If you want to connect with those who have been diagnosed under 40, you might like to read and/or introduce yourself to the Young with Breast Cancer forum.

Please let us know how you're doing, we're all here for you!

Best wishes,

From the Mods

JRNJ

Outnumbered, so sorry. Here are my tips. I had tissue expanders put in during DMX in September. They were removed due to infection in October and now I have to wait 6 months after radiation too, more than a year after original surgery. Two things. 1. Nurse gave me knitted knockers which people make for free. I realized it was just stuffed animal poly foam that I had from Michaels. I stuffed all my sports bras that had cups and pockets, and it actually looks good, is really light and comfortable. I bought one set of cheap foam pads from Amoena too. My kids have no idea, and I was a double D (saggy DD). 2. It actually gave me time to think and reevaluate instead of being so rushed with limited information. PS told me originally I was not a candidate for DIEP. But other Drs. told me otherwise. But I didn't want to be an A cup. Now I have 6 months to gain weight for DIEP surgery which hasn't been a problem, I've already gained like 15 pounds eating ice cream. I want to avoid implants if I can, so I don't have to worry about them forever. But if DIEP is too small I might consider them too.

SpecialK

JRNJ - you can also do DIEP with small implants to boost the size, sometimes called Hybrid Breast Reconstruction.

outnumbered - first, I am so sorry that you are dealing with this at your tender age - so not fair. One of my best friends is TN and was diagnosed at 37. She is single and has no family nearby, so I went with her to her surgeries and treatments. Breast cancer should not happen to any of us, but it really shouldn't happen to those who are so young. The good news is that she is doing great and was treated long enough ago that she is coming up on 5 years soon. I am also sorry that you are experiencing reconstruction challenges, and I totally get it. I had a NSBMX with tissue expanders placed, but then lost one expander after several surgical tries to save it - which stayed out for 7 months while I underwent chemo. I went on to have it replaced, slowly filled, exchanged successfully. Two years later I lost the implant on the same side during a routine repair for perforated allograft (which happens to nobody but me, lol!), which was out for 18 months. All of my issues stemmed from skin healing problems due to necrotic damage and abnormally thin pectoral muscles that inhibited new blood supply to the skin. All that to say that I was also one who struggled to adapt to being flat, and I am a lot older than you! Don't feel bad about that, it is better to acknowledge this is your truth and work toward accomplishing reconstruction that helps restore wholeness as much as it possibly can. Being patient with our current situation has to be hard, but try to find a positive in that your skin integrity will likely be improved because you will heal from the mastectomy surgery first, then do the recon. I also think sometimes that everything that happens early in the diagnostic process is overwhelming, and maybe having time between will let you process so you can tackle the recon separately from the cancer diagnosis. I found that is what happened for me, and it allowed me to think of recon as somehow separate from cancer. Maybe my mind approached it that way so I could go through the number of surgeries that I did - many I spoke to would have given up on recon if they were in my shoes, but I knew I needed to press forward. I changed surgeons and have had completed recon now for three years, no problems. The vision I had for my recon (originally NSM, had to lose them in all of the surgical process) did have to change, and I am happy with my result, but that was after adjustment to those changes. I had to modify my definition of success to accommodate the reality - that is hard, but necessary. The good news is that your cancer has been removed, you have undertaken really crappy chemo and come out the other side, you have done everything you can to save your life - the rest will come. I second using Knitted Knockers. You get them through the mail, for free, made by people who donate their time and materials. I will link the site for you. When I had one flat side I wore them because they were the most comfortable and light prosthetics I could find, and I was trying to match a pretty substantial implant, which is not shaped like a natural breast. Most prosthetics are made to match a natural remaining breast, or replace two. I had a very difficult time making my chest look symmetrical with one implant and one prosthetic, and the Knitted Knocker was the best at doing that. I wish you the best. Hang in there!

https://www.knittedknockers.org/

marysnattyg

I am so sorry to hear of your diagnosis and what you are going through especially at your young age I was lucky enough to have my surgery at the end of February right before the virus reared it's ugly head. I finally got to speak to an oncologist this week through a teleconference. Won't be doing my implants until the fall if this is ever over. I also have to wait to get my ovary out which causes me much anxiety as well. I know it must be incredibly difficult for you to be dealing with treatment now, particularly without your husband there. It's bad enough to have been diagnosed with bc but this makes it so much more difficult. It is a crazy time but one that will make us all stronger . My gyno had a long talk with me because I was so anxious even before my diagnosis (when I found out I was brca2). She said you have to live your life and put things in perspective. Choose a time to worry, scream, get angry, research, or deal with your anxieties one hour of the day. The rest of the time live, be strong and push forward. I know that is really difficult because I research everything to a fault! But her advice kind of helped. Kind of like being stuck watching the coronavirus news on tv. You can be paralyzed just watching it all day in fear or watch it for a hour to get an update and then shut it off and go about as best as you ca. I find exercise and eating healthy makes me feel so much better. You will get there. I will keep you in my prayers.

e32

I'm so sorry! You are not alone. I just signed up on here because I was feeling so guilty even bringing it up to any family and friends right now for fear they would find me insane to be even thinking about the next phase of my journey, during a pandemic. But I am also stuck in expanders with no fills because I was waiting on some areas to heal and we hadn't been able to start yet and then all this happened. I keep telling myself I had to be patient and heal from my mastectomy so I can be patient now (easier said sometimes I know). I hope you feel less alone hearing from others who are waiting as well ❤