New journey. Feeling overwhelmed.

[Blossom1966]

Hello all. I was diagnosed with invasive ductal carcinoma in October. I have had 2 partial mastectomys. Unfortunately pathology came back on both with positive margin. My specialist said that it is now recommended that I have a full mastectomy. This is the scariest thing to ever happen to me and I am feeling very overwhelmed. How have you all coped with your diagnosis and treatments?

[Jowigs]

I had positive margins and went on to have 2 further attempts to get clear margins without success so ended up having mastectomy. Personally I would have rather had mastectomy straight away but surgeon wanted to try to save my breast. For me it was a relief. If there's a chance there's a bad cell in there, take the thing off, was my thinking. I sailed through the op and recovery, was offered reconstruction but declined, I've had more than enough surgery thank you very much! I have a prosthesis which is fab. I don't even think about it and you'd never know I was one boob down if you saw me.

It's certainly not a fun time, but you'll get through it. Where you are now is the worst bit, it gets better once you've got your head around it and accepted that life will never be the same, but you adapt and learn and grow as a person and life will still be great, just different.

Sending hugs and best wishes. Xx

[Lainey66]

Hi Blossom 66. I can totally understand your worries. I was diagnosed on 2nd Oct 15. On Jan 5th this year I had a double mastectomy. To be totally honest, once I knew I had cancer I viewed it that 'My boobs were killing me'. This made it easier for me to shut off that these were my 'boobs' but something toxic that had to go. I opted to live a flat life as I did not want reconstruction. With the cancer and the mastectomy, for me, enough was enough. I am happy with my choice and life is slowly returning to normal. I have written a blog about my whole experience if you want to read it. It might be of some comfort to you. Dont hesitate to message if you want to ask questions etc. wishing you all the best. Lainey66 xxx

[Judymagpies]

Hi Blosdom,

I agree with Lainey and Jo - I viewed my breast as the diseased bit of my body and wanted it gone! I had a mastectomy at the time of diagnosis and used a prosthesis for just over a year.

The mastectomy was no problem , just take it easy afterwards. If you leave hospital with a drain in place you can receive home nursing care to help you change the drain and dress the wound.

Just over a year later I had a prophylactic mastectomy of the other breast and a double reconstruction . I am very pleased with my new boobs,! I didn't have nipples put on (at 56 and divorced who is going to see them?) , but this means I can wear t shirts without a bra and no one knows the difference!!

So please don't fear your meadtectomy - see it as marching forward to a healthy future. All the best

Judy

[Maggie18]

I had mastectomy and lymph clearance 8 weeks ago it's ok and I feel as margins clear that the cancer has gone I can start living and moving on with a exciting life now I had temporary implants so in a bra it looks fine . Take care it's difficult at times but life will get better again xxx

[Hidden]

Hello & Welcome to this Forum.

I'm sorry about your news, it must be overwhelming for you, I'm sure.

There are lots of ladies on this forum, all at different stages, on different journeys.

I had a Mastectomy in August last year & finished my Chemo just a year ago as now.

I wish you well & hope I can assure you we all find the strength to deal with it in our own way.

Good Luck & Best Wishes 💐

[04ma]

Hi, I had mastectomy on the 17th December 2012. It was really difficult but with time and all the treatment together with family support all will be well. Keep your head up high. All the best and good luck

[Debs1962]

Hi and welcome to the club nobody really wanted to join! I had a mastectomy in May last year, decided to have it off instead of lumpectomy as wanted the Cancer out, and didn't want to take any chance of any cells getting away! I had a reconstruction at the same time, an implant. Everything went really well and I have no regrets of my decision. Good luck and hope all goes well for you xx

[Hidden]

all i did was take one day at a time, one decision at a time. Know that in the end you are going to be fine but for now you need to be selfish, as for help as often as you need it, be kind to yourself, don't try to be a hero.

try and do one thing a day, go for a walk, even a short one or even write a diary entry - just a small task a day then you'll feel like you're in control and you've achieved something each day xx

[Hidden]

I have a mastectomy in October 15,the consultant said he would a lumpectomy, I said I wanted a full mastectomy ( in my mind I needed to know it was gone) I called the cancer the Alien,and it was going to be exterminated,and it was. Once it's gone,you'll have peace of mind and you can move on.

It's the most scary thing I've ever encountered,but hopefully that's the last of it.

Take care,stay strong,xxxx

[Hidden]

Hello Blossom and welcome to our support forum. Really sorry to hear your news but deep breath and one day at a time. I had a mastectomy earlier this year and I'm doing great now, my top tip to you is get some good counselling about how you feel it helped me enormously.

Big hugs xx

[Jacbowden]

Hi Blossom, you have had some great advice and encouragement here. All I can add, is that I had a full mastectomy about seven weeks ago. They didn't mess about with lumps. I would have agreed to anything to be rid of the disease, as your life and health is more precious than anything you have. My story isn't so good, but I won't go into that. Your mind will get around the shock. You will recover. Your life will be back to normal before you know it! 🌺

[Hidden in reply to Jacbowden]

Hi Jacbowden

Been thinking of you & hope you're doing OK with the Chemo & getting support with the diagnosis! Take Care 💐

[Jacbowden in reply to Hidden]

Hi there MrsNails, thank you. Second chemo coming up Monday. Feeling quite good, but annoyingly I get tired too fast! Where has my stamina gone? Are you okay?🌺❤️

[Hidden in reply to Jacbowden]

Hi Jac

The tiredness is hard but they are pumping you with pretty toxic drugs, just rest as much as you can.

I'm doing OK the weather here is wet n damp, could do with some sunshine! Hope your next Chemo goes well.

Take Care Angela 💐

[Jacbowden in reply to Hidden]

Thanks. I hope so too, in that it's killing the bad more than the rest of me!

[Lainey66 in reply to Jacbowden]

Hi Jacbowden 😀how are things going? Remember to rest when you are tired. I finished Chemo and Radio in June and still find that I get as weak as a kitten.

Sending positive vibes and lots of hugs.

Lainey66 xx

[Jacbowden in reply to Lainey66]

Going to play some golf tomorrow, it did me heaps of good last week. Thanks for asking and caring. Must say, the weather here is pretty good. 🌺❤️

[Wildeone1234]

Hi blossom,

I had the same two lumps removed only to find more. I had a full mastectomy last Christmas. than in march finished radio theropy. in the july I had overies removed as a preventive measure. I have just had my first all clear mamagram last Saturday. Now its onwards and upwards to the reconstruction for next march. I live every day to the full brought myself a old campervan in the summer and had a whale of a time and last week got myself a motorbike to play with for the spring. It was scary when I got my news as I was on my own and didn't get sick pay. so I said sod it! sold the house took time out on the proceeds. I took all the stress out my life gained a few friends and lost a lot of hangers ons. I count myself lucky I am looking ahead each day as it comes bring it on. you will get through this. xx

[Lainey66 in reply to Wildeone1234]

Hey there Wildone1234, l love the idea of the campervan and bike. I too kept a handful of pals and lost a number of hangers on. My life is so much better for it although at the time it didnt feel that way. I had a new tattoo and am currently looking at designs for my mastectomy scars .... woo hoo 😂😂 hope all is going well and safe biking. Lainey 66

[Jacbowden in reply to Wildeone1234]

Sounds brilliant. Love your style. ❤️🌺

[Jennymary]

I can't begin to understand how you are feeling, I had lumpectomies, but I can send you loads of love and hugs to help you on your journey xxxxxxxx

[Vic1970]

Hi,I have just had lumpectomy 2 weeks ago,get biopsy results etc tomorrow,is this what happened with your operations?I think they do try and conserve breast as much as possible these days don't they,not sure it's always the right decision though.Mastectomy is the right thing to do,I will if they give me the option I think,there was a lady having reconstruction when I had my op and she was so pleased to get it done and felt totally confident that it was the right thing for her.I wasn't given a choice were you?Hope you can come to terms with it,lots of support on here.stay strong,luv vicky.x

[Blossom1966 in reply to Vic1970]

Yes. They tried twice now to save the breast but still got positive margin. I just didn't think going into this that I would end up having to have 3 surgeries. But at this point I know it's the right thing to do. I hope your biopsy results come back with negative margin . God Bless!

[caroland53]

Hi, I had my lumpectomy and lymph nodes removed 9 days ago. My diagnosis was almost a year ago. I'm back at the hospital this afternoon for my results. Every step so far has been scary but I guess it's a path we have to stay on til it's clear. Good luck and keep dipping in here... there are a lot of lovely, very helpful people to give support. xXx

I just wanted to add on that I had my results appointment yesterday and my lymph nodes are clear but I've to go back for more surgery on Monday as he needs to remove more breast tissue. Guess it happens more now they're trying to conserve more breast tissue. 🙁

[Gracie66]

Hi Blossom. In my mind the worst is actually behind you. you had the diagnosis you thought you'd never get, and you got your head round that. Now you are being looked after.. I had a small lump but changes elsewhere in the breast, the doctor recommended a full mastectomy (one breast only) and gave me some choices... to say i was floored with shock is an understatement. i was just hearing, small lump, has not spread, and then mastectomy in the same sentence.. I know exactly how you're feeling.. i am not going to patronise you and say this is a big journey and you will look back in a year or 2 and say i wouldnt be who i was without the cancer, but to a degree this is true...

Are you getting choices about the type of operation you can have? i debated long and hard and eventually went for the recon at the same time as the mastectomy, using tummy tissue, it's called a Diep Flap reconstruction.. it's a long op but for me it was a good choice, it's not for everyone.. i do a lot of swimming and diving, so my girlies are on show a lot and prosthesis would only end up annoying me i thought, plus i wasnt sure if i was to have any radium after the operation, and implants can be affected by radium and have to be replaced so i just bit the bullet.. i'm a year down the line now since the op, chemo over since february, and i've been discharged by the oncology dept. a few nips and tweaks possibly into the future but those are optional cosmetic appointments.

whatever you decide will be the best choice for you and you will come back from this and be stronger for it.

meantime lean on us, rant and shout. we know what you are going through. everyone in here is so lovely and knows exactly how scary it is and what you are going through.

gracie. xxx

[Berylynn]

Reading these stories help but emotions are raw, bringing tears to my eyes, mastectomy and reconstruction were thrown at me yesterday. Had 25 years clear, not sure if I will refind sight again, its the kind of support I need, but still in a daze without sleep, not ready to share. Not quite in the right headspace to read. Thank you for sharing your stories.

[Lainey66 in reply to Berylynn]

Berylynn, if you do find this site again pin it to your task bar which will make it easier for you to access. You can dip in and out without sharing, however, and I am sure everyone will agree, we are here to listen when you want to let it all go. sending you massive positive vibes and hugs. Lainey66 xxx

[Jacbowden in reply to Berylynn]

It's incredible what your mind will get around in a few days. You've done it before, you'll be fine again. Just pop on here when you're ready. Meanwhile I'm sending love across the oceans from Oz. Beryl. ❤️🌺

[Berylynn in reply to Jacbowden]

Thank you I feel better after a good nights sleep. Can think more logically, diabetic need to cut risks down, may be double masectomy full stop. Bad timing December and midway on a botanical illustration course. Just had to cancell everything...for a time...slowing informing relatives. Can manage messages not sure that I am so good at talking yet, last time I felt like this was abrievement. I find I keep looking in the mirror and thinking. Loved the breast reduction to get away from lopsidedness. It does impact on the back. Horrified and want to run away from some of these stories, too much information but I am interested in the mind after masectomy. Relief or shock repeating? god bless you all!

[Blossom1966]

Thank you to everyone who has responded. I know it's the right thing to do. Thankfully the cancer has not metastasized to my lymph nodes. But just the thought of having to undergo a 3rd surgery is something that makes me almost panic. But I want the cancer out and be able to move on to therapy.

I have a great support group of family and friends who want to help, but I am used to being the strong one in my family and the one in charge at work and with this I feel so out of control.

I really appreciate your words of encouragement and understanding. I know I need to take it one day at a time. Although I hate for any of you to have gone through this too, it's nice to know I'm not alone.

[lovesradio]

I also thought mastectomy was a very scary outcome and unlike others it took me a long time to come to terms with the loss of my left breast. However I did eventually believe it was the right thing to happen, did not want reconstruction and am happy with prosthestic . You will get through all of this but at times wonder how and why, that's ok. Find some nice treats in between treatments just to enjoy from time to time.

[waveylines]

I was diagnosed late 2014 & had a masectomy april 2015. The treatment is a long hard road but you do come out in the end stronger & better! Masectomy was easiest part I felt -far easier then chemo! Am due a recon planned for next spring as I wanted time to recover -am having a DIEP so another big process. Loosing my hair permenantly was much harder then loosing my breast. No one knows with my breast prothesis in clothes but hair is on show & wigs can shift or be blown off..... Stay strong you can do this I was told & its true the op is remarkabley pain free' Just make sure you do the exercises afterwards to prevent the scar tissue building up. Hugs xx

[Jacbowden in reply to waveylines]

Your hair will grow back surely? Sending love and positive thoughts.❤️🌺

[waveylines]

Afraid not Jacbowden.....finsihed chemo nearly two years ago. Oncologist and dermatologist say its extremely likely now that it is permenant. The chemo I had has a pretty high side effect of permenant hair loss.....sadly I wasnt told about that one before treatment.

[Debra23]

Hi Blossom, I had a diagnosis of DCIS in May and had a mastectomy and LD flap reconstruction as one operation. It is so scary when you are told you need a mastectomy and it seemed so over the top for non-invasive DCIS. There are different options if you want a reconstruction, your consultant and the breast care nurses should discuss them all with you. At this moment in time I am pleased I had it done, it takes away a lot of the worry of have they got it all out. Personally I did not find post op painful, and the care in hospital was excellent. I have also had a reduction of the other breast, so I have a matching pair of boobs again now.

Be kind to yourself, ask for support, ask lots of questions, discuss with your consultant what you want the outcome to be, what results you would be happy with. I wish you well and send hugs, all the best, Debra xx

[Blossom1966 in reply to Debra23]

Hey Debra-I had 2 partial mastectomys and unfortunately both came back with positive margin. So now I have been lined up for a total mastectomy, right breast only for this Wed. I have decided against reconstruction. Plan to go with prosthesis. But I can op for recon later if I choose to. Right now I'm just not comfortable being under anesthesia for a long time.

I know that I will need radiation, but chemo is undetermined until after pathology from surgery.

Thankfully I have a great team of doctors and a wonderful support group around me. And I am grateful for all of the replies and support I have received from everyone here. Thanks to all! Bonnie

[Blossom1966]

Well, had my mastectomy last Wed., am home recovering. Not much pain. Had an OnQ pump which I got to remove Monday evening. Drain is still in but no discomfort from it. Now just waiting for the pathology from the surgery. Hope everyone had a good Christmas.

[Grisol]

I am sorry you are going through this. I had my biopsy on Dec 23rd and got the news on the 29th. My mind has been both numb and racing at the same time. Talking to my love ones and close friends has help me cope with it. Finding this group is also helping.

To save my nipples, I just had a lumpectomy and a breast lift/ reduction. My goal is that once this surgery heals, I will have a mastectomy. My breast surgeon would prefer that I stop at this point but, for my peace of mind I need to go with it.

Listen to your doctors, but make sure you do what is right for you. Listening to people in this forum that have gone through, or are going through this right now, has also been a great help.

Take care of your self!