never adjusted

[fdale]

I had a mastectomy three years ago and I've never gotten over this deep seated shock as to how it looks. Don't bother writing if all you can think to say is I'm lucky the cancer is gone.

[Multigravida1956]

I’m so sorry and understand how you must feel. I had a lumpectomy and then total node clearance in February and I’m in the mist of chemotherapy. I still can’t believe how this has happened. Getting my head around the treatment has been the hardest part for me. Sending my best wishes.

[Nicu18 in reply to Multigravida1956]

I empathize with you. I too had a mastectomy many years ago. It still shocks me.

[fdale in reply to Nicu18]

Thank you so much for writing back. It means the world to me. I've been looking for a physical support group but there isn't any.

[Burningrock in reply to fdale]

There is an amazing online support group based out of West Springfield, MA. It is a zoom group. Prior to Covid it was a physical meeting group. I was dx during Covid and the social worker recommended this group. It meets every Tuesday from 6:00-7:30 PM. The leader of the group, Cindy, is a two-time survivor. Members of the group come from as far away as CA and FL. She also runs an 8 wk program called Living A New Day which I found very helpful. Her group is on Facebook and is called Each Moment We’re Alive if you want to check out the group. There is no charge for joining/attending. By the way, I am in CT.

[fdale in reply to Multigravida1956]

Thank you for writing back. It means the world to me. I've been looking for a physical support group but there isn't any.

[fdale in reply to Multigravida1956]

Thank you for writing back. It means the world to me. I've tried to find a physical support group but there isn't any.

[fdale in reply to Multigravida1956]

My very best wishes to you too.

[suenavywife]

After my first lumpectomy, right breast, my doctor suggested a breast reduction on the other breast, because I was so self conscious of the size difference. What a mistake! The doctor pushed most of the tissue to under my arm! Would never do that again. Now, after my second lumpectomy, on the left breast, the breast reduction “look” is still what bothers me. I hope one day we all can come to liking our bodies again, God Bless you on your journey!

[fdale in reply to suenavywife]

I'm sorry the procedures did not come out right for you. I thought mine would look like a line across my chest but it looks just terrible. I hope we can stop feeling shocked. I have a lot of skin and fat tucked under my armpits. Why they didn't take that away I don't know.

[Oldmegone]

I had double mastectomy then node clearance at 45, five years ago this September, followed by all the goodies (Chemo + radiation, now Letrozole & Goserelin)

I had thought about reconstruction until one point when I was umming and ahhing, my youngest, then 8yrs old, asked “Can you die from it?” When I replied “It’s not likely but yes there’s a chance I could” he said “So don’t do it!” So I haven’t.

I still struggle sometimes with things like:

- Feeling like I made a rushed decision. It was 2 weeks between biopsy result and surgery. Although, the Surgeon did say I made the right decision because my left breast had more cancer in it than first thought.

- Maybe I should’ve left my right breast as there were no signs of cancer in it.

- At times I think I should’ve opted for skin sparing surgery so I could at least have my nipples, possibly still have some sensation there and maybe implants. Although I did want to avoid further surgeries often needed with implants so was mainly considering DIEP Flap reconstruction.

- When I see myself in the mirror I alternate between thinking Oh Well and get on with it, to hating my scars and flatness and basically the whole f…ing (sorry) “journey” I’ve been through.

- Surgery damaged something in my left arm that caused a winged shoulder. I still don’t have full strength or movement, probably never will. Sooooo frustrating!

- I kick myself for waiting a year and a half to get a second mammogram when the first was a false negative. The cancer might have been caught before it spread to my lymph nodes. Will never know.

- I now often feel like an old woman at 50. Instant menopause with Chemo, radiation, heart palpitations etc from treatment and medications, joint pains, neuropathy, hair thinning and greying, now into osteopenia as well as skin softening and sagging. I know I am also at that age when things start going south but this is ridiculous! Still not being able to get decent sleep doesn’t help either.

I could go on and on but basically I know exactly where you’re coming from. Others that haven’t been through it try to understand but don’t know what to say, which is understandable.

I always tried to keep a brave face and answer people with “Could be better, could be worse” then have a good cry later at home. I still have a cry on the way to work some days or at night. I’m crying now 🫤

I try to focus on the present, whatever I’m doing at the time and push thoughts of it all out of my head. Even if it’s a basic job like cleaning my teeth. I can’t relax like I used to but I do try to do more things that I enjoy. I even found a job that I love , in a patchwork shop. No stress and lovely people to work for. I have four kids under 16 so am always busy and focus on them too.

As for the flat chest, I never say never. I might look at reconstruction down the track. I wear soft breast forms (just the padded material ones) in a pull on stretchy bra. I always have to adjust things though so bit frustrating. I keep thinking I’ll look at getting proper bras and try other breast forms but don’t have any suppliers nearby and normal bras can be more uncomfortable so I keep putting it off.

Others have tattoos covering the area or tattooed nipples etc.

Apparently there is a fairly new breast implant in the wings they have been working on. It’s some type of breast shape they implant and your body forms fat or tissue around it, then your body absorbs the implant. Something like that anyway. ( The memory’s not great either 😒) Sounds promising.

While my post might not be overly helpful, hopefully it lets you know that you’re not alone and not crazy for feeling the way you do. Cancer sucks and will unfortunately forever be in the back of our minds. For me I think it will always be a work in progress.

Take care of yourself and vent if you need to. We can’t always just suck it up!

💐🙋🏻‍♀️

[suenavywife in reply to Oldmegone]

Thank you for sharing your journey! And YES, we can’t always suck it up! And some days we can carry on with no problems. My first cancer lumpectomy was on my grandsons day of birth, he’s 19 now. My second lumpectomy was June 19, 2019. Now a national holiday! And October, Breast Cancer awareness month, was when I had my fist cancer. I struggle how to deal with these yearly reminders. My cancers were low grade, no chemo, radiation both times. I am Blessed that I “got off easy” but it’s the head games I play with myself, that sometimes don’t go any where.

I had genetic testing done the second go around, and now I’m identified at a greater risk because I have this Chek2 gene. Sometimes I wish I hadn’t done the genetic testing. Some days I ignore the whole cancer idea, and future yearly testing and then I have days that I tell myself, pay attention!

I just had my yearly mammogram and I’m now back to screening, I had diagnostic ones, for the past two years, and this year was the most painful one in my life. Not looking forward to next year! However, is not as bad as a breast MRI!

My second cancer was near my chest wall, making the mammogram even more difficult. I was told, this year, that the radiation continues to affect the breast tissue for maybe five years! Making the mammogram even more difficult. I’ve never heard this before. I’m 66, and sometimes have a conversation with myself saying, hmmm, when will my last mammogram be. Maybe 70, 75. Time will tell.

Not sure how many more years I’ll be willing to have the Breast MRI done. Someone needs to redesign that MRI position for us women! You are laying on your stomach in the Superman position. In a very uncomfortable form that hurts your ribs. I have bad shoulders and my ribs hurt for days after the MRI. And they tell me I need to have it yearly for the rest of my life because of this Chek2 gene.

Well, it has been very mentally helpful, to me, to read and contribute to this blog. Thank you ladies. Let’s all continue our journeys the best we can.

[fdale in reply to suenavywife]

Not to worry you, but my Grandmother got the breast cancer at 85 and in those days there wasn't a lot of testing. So it ran it's course up to her brain. So I guess we should get our yearly tests. Take care.

[suenavywife in reply to fdale]

thank you! I’ll remember your grandma in the future.

[fdale in reply to Oldmegone]

Yes, I also felt like I'd made a rushed decision. I had the cancer in the left side and decided to take out the right side too. It just didn't make sense to keep it so we'd be going through all this again.

I relate to your whole list.

The getting old part is hard to take. I really hate the hair change but that was coming at my age anyway. Not sleeping properly is very difficult. I'm sorry you are still dealing with insomnia.

Your long helpful post really made my day.

Maybe I should hang the mirror higher so it doesn't show below my neck.

I found a fancy shop called Especially For Women and they have all products for nursing moms and bras and swimsuits for women who've had mastectomies. The owner goes into the fitting room with you and makes sure everything is right. She gave me a big hug after the sale. She's the only person who has seen my chest. My boyfriend hasn't even seen it.

[Oldmegone in reply to fdale]

You’re so right about the mirror. I use them as little as possible, I hate seeing the saggy jowls 🫤 and wrinkles! My image these days doesn’t fit with who I remember I was 😩. I suppose it’s the same for everyone as we get older.

Hopefully one day you’ll be comfortable enough with your chest to let your boyfriend see it. He might surprise you and give you the reaction you need.

I had four young kids who were curious and wanted to see the scars and bruising etc after the mastectomy so I tried to be matter-of-fact about it and showed them and my partner. There were a few tears at times from a few of us but they helped keep me a bit stable I suppose.

The same happened when they shaved my head for me when it was falling out too much to keep it any longer. They all took turns then drew all over my head. I shed a tear or two then but kept a brave face for them. They all helped get me through and were a constant reminder of why I was fighting to still be around.

Wishing everyone here more good days than bad.

😊

[suenavywife]

for the past 19 years I’ve worn camisoles, and only a handful of times an actual bra. Nothing was comfortable, and basically I said screw it. For about 10 years I wore a vest over my shirts to hide my breast size difference. It worked, until I did the breast reduction. I don’t need the vests any more to hide the size difference, I then had to deal with the discomfort of a change in tissue location, under my armpit.

I’ve told myself, if I ever had to have a mastectomy, I might consider a butterfly tattoo. I’m not into tattoos, and I hope and pray I never have to make that decision.

[mathematics]

Yes it is a shock, I had a lumpectomy so my one breast is smaller than the other, so you could say I was luckier than you however after my chemo my hair did not grow back very good at all. My hair is now still very fine and looks nothing like it did, which I find difficult and after the radiotherapy my one arm swelled up with lymphedema, although that has gone down a lot now. So although you can shrug it off and say to others oh well I am still here it does not really help does it. My mother does not think as she goes on about me getting my hair cut or using a hot curlers to curl it to make it look thicker or worst of all offering to buy me a wig, when I was given two anyway before chemo, so I suppose people can be unintentionally thoughtless and expect you to be upbeat and grateful to be alive. Wishing you all the best and understand your shock.

[suenavywife in reply to mathematics]

Actually, I’m not sure which is more bothersome, the comments or no comments. My sister had breast cancer before me and she shared nothing of her journey. And thinking about it now, I still don’t know which is better for me, I like prayers being said for me, for sure. But comments are not the same as sharing our journey.

As my Son would say, #totally, I benefit from these conversations we are having.

[fdale in reply to mathematics]

God it's great to reread these posts. It's three years after my surgery but it's just what I needed to hear.

[Warrio]

Hugs, I'm so sorry you have this deep seeded reminder. I know everyone is different, I don't look at my scars closely of for any amount of time. A few seconds here and there. I've seen (not tried) something that may help you, if you're wanting a distraction from the scars. Ive seen the temporary mastectomy tattoos they are designed to cover the scars, and are temporary. The scars are a shocking reminder of the horrific damage the cancer ultimately cost you and your body. Maybe talking with a social worker, nurse navigator or therapist might give you some more ideas as to how to cope with this. I'm so sorry this is part of your daily reality. Even though I don't know you, you are strong and you are beautiful. Scars come with stories, some we would rather forget. You're not alone. Big big hugs

[fdale in reply to Warrio]

I couldn't volunteer for more pain in tatoos. I have a therapist but she hardly talks. Thanks for your suggestions. You're very brave and kind.

[Snoopydrop]

I had a mastectomy a year ago. Am on Tamoxifen which is probably causing my hair thinning. Can anyone recommend a gentle shampoo? My Breast nurses referred me to Nicola Jane for bras. A very kind and understanding lady did the fitting. I also bought a swimsuit. Providing I dont look wonky I am working up the courage to go swimming for the first time. And also making sure there are proper changing rooms. Not communal! I recommend Nicola Jane. They are pricey but they do have sales.

At my years follow up with the consultant he said I could have plastic surgery on my scar. Its quite raised and red but I would rather not have any more surgery.

You are all brave ladies and your stories inspirational. Take care.

[mathematics in reply to Snoopydrop]

Yes I used Plantur from any supermarket or Growme you can get from internet they did help me with hair loss.

[Snoopydrop in reply to mathematics]

Thank you!

[Warrio in reply to Snoopydrop]

I've been using bondi boost hg. That has seemed to help my hair, I usually have reactions to shampoo this one has been good so far (using 6 months) big hugs

[Snoopydrop in reply to Warrio]

Thats helpful thank you.

[fdale in reply to Snoopydrop]

Have you gone swimming yet ?? I went swimming yesterday at the public pool in my $90,00 mastectomy bathing suit. The only problem was the prosthetic inserts kept floating up and I'd have to readjust myself. LOL But the water was divine and I got to swim which is excellent exercise. It was so nice to get out of the house. I hope you get to swim soon.

[Snoopydrop in reply to fdale]

Thanks for the encouragement to try swimming.! It sounds like you really enjoyed it. That made me laugh the thought of the prosthetic floating up! I will keep an eye on that when I do go. Thank goodness we havent lost our sense of humour!We are just about to move and I have been putting off sorting my bras. I can relate to your comment about having a favourite that just isnt suitable any more.

Determined to get back in the pool.

[fdale]

All these posts have been so wonderful to read. I thank you ALL. I never expected such heart felt responses and I want to you know I love you for it.

[Sadiedog12]

Hello f Dale, reading all the replies to your post has helped me too. I had cancer in both breasts, diagnosed at the same time and had lumpectomies followed by chemo and radiation. Although I still have breasts they look distorted and offend me whenever I have to look at them. Your post struck a chord because I realised that I actively avoid looking in my bathroom mirror as I step out of the shower and never look at myself naked now. For me the surgery and treatment has been a huge blow to my femininity and my overall health. I’m not young, and I’m grateful this didn’t happen when I was, because it must be truly devastating .In addition to having an altered body image and perhaps also having to deal with a premature menopause or fertility issues to name but a few. There can be enormous pressure to be grateful to be alive and I am, but I still mourn the other me in ways which some might consider to be superficial. You are definitely not alone in how you feel. Sending you a big hug!X

[fdale in reply to Sadiedog12]

Thank you. The week before I got the test results, I bought a beautiful pink bra. I loved that pink bra. After the surgery and a year later we had to move from Fort Lauderdale to Gainesville and I finally gave away the pink bra to charity. Here's a hug right back at you.

[Sadiedog12 in reply to fdale]

Bless you.. I totally understand about the bra. I love pretty lingerie.. always have. I still buy and wear it though, just because I refuse to wear the alternative X

[fdale]

Hey guys, you know what's super annoying ?? The breast cancer ads on TV, every night.

[Burningrock in reply to fdale]

i agree! I was diagnosed 2 1/2 years ago, and realize that every night almost every commercial is about breast cancer pharmaceuticals.

[suenavywife in reply to fdale]

yes, I agree! I often wonder who the ads are directed at. My first cancer was in October, 2003. And every October, all month, I am reminded about my breast cancer! My second cancer lumpectomy surgery was June 19, and now that is the newest national holiday! I still can’t wrap my head around my thoughts of the reminders. Yes, I am grateful to be alive, yes, my cancers were low grade, and why don’t I like the constant cancer reminders?

God bless us all on our individual journeys!

[MisterSister]

Thank you for your honesty. That's why I'm on here, asking.