Desperate - newly diagnosed with DCIS

[Conorchloe]

Kathryn i forgot to add my new breast is amazing they managed to save the skin and the nipple so it looks exactly the same as before except without the dcis going on inside.
They attach a flap for a few months underneath (you cant see it looking down or through clothes, only in the mirror) but after a few months i will have day surgery to have it removed and the breast aligned with the other one (mine barely needs aligning) it looks so normal! I will have a scar underneath in the crease so unnoticeable!

Surgery was 5 wks ago. Dont get me wrong it was uncomfortable afterwards but i was up and about walking after two days. You realise you can do more each week but i would say at 4 weeks i turned a corner and could do more or less everything bar lift or hoover or work just yet!

Results found a small amount of invasive c so all gone now apart from a small amount of dcis in skin so need further treatment for that. But basically everything is fast.


Giid luck lovely
CC

[RoxanneT]

Kath sorry to hear you've joined our club. 

I was warned that my plastic surgeon was thoughtful  and blunt... it was so true. There was a lot of standing around with my top off, but gratefully there were no students to observe. He was blunt but not in a rude way, however when one is already feeling uncertain they can seem harsh. He was good and told me all the options available to me.

i should warn you that he may poke around other bits of your body such as back and belly to ascertain where he can take from. 

As others have said you need to do what's right for you. XX

[kathrynb]

Helena your timeline is so very helpful in giving me a little idea of what I might expect thank you x

[kathrynb]

Thank you so so much CC, I am thrilled that you have come this far and your wonderful positive words are amazing. Very grateful to you and will keep reading these kind and positive words and let you know how I get on with this thing. I know that if I was going to get anything then DCIS is the best of a very bad job but so far it feels like a nightmare. Having said that keeping a diary detailing everything that is going on so I can physically tick off the days to resolution and remember every detail of people's kindness xx

[Conorchloe]

Hi kathryn sorry my phone went flat as usual.
Being diagnosed with this is a massive shock. It consumes your life, your thoughts, your conversations, everything!

I remember going to a friends house to tell her. I blurted it out and broke into tears because i could hear myself saying it out loud. She turned to me and laughed and said this its ok if youre ever going to get c this is the one you want! Its a good c she said and she was right! You can get rid of it!

Read everything, find out all your options and you will know in your heart which option is right for you personally.

The shock will leave you because you will just want to get on with this blip in your life, get rid and live your life. Determination and the fact that you HAVE to deal with it and get rid of it will take over! Cry when you want to youve earned the right!!!

I had a mastectomy with immediate diep reconstruction 5 weeks ago. It was right for me!
My dcis is hormone driven so may have to take tamoxifen for a few years. I will know for definate this friday.

Dont be scared. Stand up to it! Get rid whichever way is best for you! They will work fast with you and you will have decisions to make but by god they really do respect your decisions and they want to do whats best for you.

Read the forum, you really wi t be on your own youll get lots of support.

Hugs for now
CC

[kathrynb]

Thank you all you ladies who have taken time out of your Sunday evening to help me with your positive messages. I will ring my GP tomorrow and also my BCN to double check I have definitely been referred to the plastic surgeon. If I can slowly make steps towards resolution it will really help. As I sit here writing this the knot of pain in my chest doesn't seem quite so tight. I have had so much love and kindness from friends and family this week but your support as ladies who have experienced this is invaluable. I shall continue to lean upon you I am sure and I hope in the future I can offer the same kindness and advice to other. Will let you all know how I get on. Perhaps I may even sleep a little tonight! Best wishes

[kathrynb]

Ann how kind of you to send your absolutely positive and kind words. It is wonderful to know others have been through this and have had such positive outcomes.

[kathrynb]

Thank you so so much. A lot of helpful information and hope. This is all so useful and is helping me get some clarity Ali and lady bowler I am very very grateful.

[ann-m]

Hi Kathryn,
The early days of diagnosis are a shock, but you will get through it. It’s not invasive bc, so that’s good. Surgery will get it sorted out for you.
Surgery is excellent now, with many women here reporting feeling pleased with the results, so there’s every reason to be positive that whatever surgery you have, you will have a good cosmetic result. The important thing is, to get it dealt with. My bc was very small, so I only have a barely there 2 inch scar.
You should get a date quite quickly & be on the path to recovery before to long.
ann x

[Ali49]

Ladybowler is pretty amazing too and hss supported me right through. Thanls Helena xc

[Ali49]

Mine has been a bit of a journey Kathryn as i originally had a lumpectomy and cavity shave to achieve clear margins - followed by 15 radiotherapy. I was not offered a masectomy then.

A year later and a small invasive cancer was found so i had chemo and then masectomy. I have had a complete response to chemo and there was no cancer left and none in my lymph nodes.

3 weeks on i am very happy with my new breast. I had 50mls of saline injected into expander this week (didnt feel a thing) and can have this done upto 5 more times til the breast is the desired size. In 6 months to a years time, when my skin is ready i will have expander taken out and the silicon implant put in. I can then have nipple reconstrction and a tattoo if i want it. I have seen the results with a fewcother ladies at my breast clinic and they are amazing. I do my exercises each day.

Emotionally i am coping well - i am glad the breast, along with the cancer, has gone. My new breast is much better than i thought it would be. I didnt have stitches. The skin was glued together and i just had steri strips on the scar for 10 days. I wear the bra that my breast nurse gave me and has told me to wear it day and night for 6 weeks. Last night i went to a party though so wore my own non wired bra and it was fine.

I am not minimising this whole scary process Kathryn as I know we are all different but try to stay positive and see whatever treatmemt you need as being 9ne step closer to getting better.

Sending you a hug xxx

[ladybowler]

Kathryn

Well from diagnosis to end of active treatment it was 4 months basically:

22.9.16 diagnosis

13.10.16 WLE (wide local excision) and SNB (sentinel node biopsy)

16/11/16 results

22/11/26 oncology appointment to discuss radiotherapy and hormone blocking tablet

30/11/16 planning apt for radiotherapy

22/12/16 20 sessions of radiotherapy start, that was interesting because it involved Xmas and New Year bank holidays which extended it by 5 days

19/1/17 radiotherapy finish, oh my what a day that was 🙂 🙂

I put the terminology in so if you see/hear them you know what they mean.

phew, sometimes you do not have time to draw breath but I am so grateful to my wonderful breast care team who got me to where I am today.  Ok I am on tamoxifen for 10 years, well 8.5 years now but it is a small price to pay taking that little tablet every day.

Helena xxx

[kathrynb]

Dizzybee your replies are so encouraging and helpful to aid me in processing all of this. I think I will visit my GP need to find the strength to help myself. Haven't been eating or sleeping . Also lots going on at work. I have no idea how long it takes usually between diagnosis and surgery (whatever that is) but I realise that I have to keep calm and carry on and at the moment as much use as a chocolate fireguard! I don't know what a lumpectomy with oncoplastic reconstruction is but I will look it up. Thank you so so much for taking the trouble to help me. I am glad I have taken the plunge and joined this forum. Your own experiences and positivity are already helping me unravel this horrible mess xx

[kathrynb]

Helena this is very reassuring to know. I could live with scars. Can I ask how long the entire process to get to where you are took. I know my timings may not be the same but it gives me and idea so can weigh up pros and cons.

[Dizzybee]

Kathryn

I forgot to say, I did get antidepressants to deal with my anxiety problems, I was in such a state. It's not something everyone wants to do, but it helped me get through what was a long journey. So it's something to discuss with your doctor if you need the help, there are things out there.

[Dizzybee]

Hi Kathryn

I had a large area of DCIS and was offered either mastectomy and reconstruction or a lumpectomy. I really didn't want to lose my breast unless there was no choice, and my surgeon was confident he could get a good cosmetic outcome by moving the remaining tissue round, so I chose a lumpectomy with oncoplastic reconstruction.

At various points before the surgery I was distraught at what was going to be done to me, so I know exactly what you're going through, I couldn't see how there could ever be a reasonable cosmetic outcome.

But after two operations to remove the cancer, and two breast reductions to the other side, I'm happy with the results. In fact, I prefer my smaller cup size. The scars on my cancer side aren't visible at all, and they're fading fast on the other side.

You will get through this, and this stage is where everything is so overwhelming. But it will get better, DCIS is the best diagnosis to have. And I'm sure you will have great treatment, it is amazing what they can do.

I'm glad you've found these boards, there are so many women on here who can really understand how you feel, we've all been there in the darkest days. But we're still here when things are on the up, to support each other.

Sending you love and hugs

Xxx

[ladybowler]

Kathryn

Ali is quite an amazing lady xxx

[ladybowler]

Kathryn

I really do not mind at all and it is not at all vain, because this is a scary time, anything I can do to reassure you I will.

My lumpectomy was on the right breast at the top, it was a thickening that was picked up on a routine 3 yearly mammogram, yep I am over 50 :).  I have a very fine scar about 3 inches long, it just looks like a crease, it is only when I lean forward that I have what looks like a dimple where the tumour was removed, but other than that you would not know.  I also have a fine scar under my arm where they did a sentinel node biopsy as part of the lumpectomy, again that is a very fine crease like scar

Helena xxx

[kathrynb]

Hi Ali this is very inspiring. You sound like you have been amazing especially with kids to look after. I am lucky I guess because my beautiful girls are grown up and happy but I miss them terribly living at home. It sounds like your recovery is going very well indeed. You must feel so relieved. Do you need any other treatment? Also and I hope you don't mind my asking how hard is it coming to terms with your new breast? I don't have myself down as vane and I realise I am not a young girl but i do want to still feel womanly

[Ali49]

Hi Kathryn, i am sorry that you find yourself here but i lnow that rigjt now this is where you need to be! This forum is invaluable and the ladies on here will give you the support,help, advice and love to get you through.

The lump of anxiety, the sleepless nights, the ABSOLUTE shock - is something we have all felt and is, I am sure, absolutely normal!

I had a masectome 3 weeks ago with a tissue expander implant. My consultant, surgeon and breat nurses have been amazing. I was back driving yesterday and i've ironed the kids uniforms tonight! I am almost 51!

We all deal with things in our own way Kathryn. So only ypu will know if you need help from the GP with anxiety. I have cried - mainly in the shower - so the kids didnt see me, i have felt angry and scared. But i have tried to stay in the day and i have listened and asked lots of questions. I have surprised myself!!

I have no regrets at all about having the masectomy as now i know it is gone!

I hope this helps and i hope you feel better soon xx

[kathrynb]

Thank you Conorchloe. The kindness of you and Helena is humbling me. To have such quick responses is very kind indeed

[Conorchloe]

Back in a moment

[Conorchloe]

Hi kathryn. Welcome to the club no one wants to be a member of but im so glad you have found this forum because you will never feel alone here and everyone understands and helps as much as they can.
I going to try and take some of your anxiety away

[kathrynb]

Thank you Helena I am grateful for your reassurance. Do you mind me asking as far as possible are you happy with your appearance after the lumpectomy? It sounds a terribly vain question I know. I am so very glad to read your life is back to normal. You are obviously a very nice person to be taking the trouble to help me

[ladybowler]

kathryn

Absolutely no problem glad I am able to be of some help and assurance.

I was diagnosed in Sept 2016 with grade 1 tubular, oestrogen positive bc, had a lumpectomy in Oct 2016 and followed up with 20 sessions of radiotherapy late December 2016/January 2017.  Life has been back to normal since last February, I am taking tamoxifen for 10 years, but I can definitely assure you that light is at the end of the tunnel.

Helena xxx

[kathrynb]

Thank you Helena your reply means a lot to get through this agony. I am not sure from your reply what stage you are at and what treatment you has had but I sincerely hope all is good with you. I just need to see light at the end of the tunnel. As you say not a place any of us expected to be. I am so very grateful for your support and I send the same back xx

[ladybowler]

kathrynb

I have not had the same diagnosis as you, but wanted to say hello and welcome, even though it is not somewhere we would willingly be.  One thing is for sure you will get loads of help and support on here from the wonderful ladies

This is the worst time but honestly once you have got your treatment plan in place it will be a lot easier, it is fear of the unknown at the moment.  When you get your results they will give you your treatment plan which will set out what is going to happen and when. 

The way you are feeling is totally normal and we can all relate to it.

I am afraid I can not help about the plastic surgeon as my bc was very different

Sending you hugs and just come on here whenever you need to, ask questions and we will always help and support you however we can.

Sending you hugs

Helena xxx

[kathrynb]

Hi everyone I was diagnosed with intermediate grade DCIS a week ago. I originally said I would not have a mastectomy so am presently booked in for MRI guided biopsy next Thursday and then follow up with surgeon 23rd or 26th March. Also waiting for appointment with plastic surgeon soon so they can give me more info. It is my left breast. At the moment the shock is massive can't eat or sleep. Huge lump of constant anxiety pain. The uncertainty is terrible but I realise I have to get though this somehow. I am 53 with a wonderful husband and daughters and wonderful friends so much kindness but I am beside myself. Can anyone help with the following questions. I live in Cambridge and I know every health authority is different but how long am I likely to wait for treatment to be done? Also would it be a good idea to get meds from anxiety from GP to help me through this. Finally please please give me some hope that I will come out of this still looking and feeling like a woman. Would it be better just to have a mastectomy with immediate recon poss diep flap. What is the appointment with the plastic surgeon like. Literally any help you can give me to take this awful anxiety away and give me hope. Please help. Thank you in advance