Desperate - newly diagnosed with DCIS

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

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

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

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

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

Back in a moment

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

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

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

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

 

 

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.

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 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

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

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

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 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.

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

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