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diagnosed with DCIS today.....shocked

14 REPLIES 14
cath4512
Member

Re: diagnosed with DCIS today.....shocked

I saw my surgeon today. He said my best option is skin saving mastectomy with implant & then he will adjust my other breast in 3 months to give better symetry. I have the op on 1st July.
He also said they would do a sentinal node removal at the same time.
The DCIS type is .... Intermediate nuclear grade DCIS with focal possible microinvasion ( B5a) Does anyone know what that means please??

Thanks again xx
Guest user
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Re: diagnosed with DCIS today.....shocked

The NHS will reduce the other boob, do uplift. Anything. I had the strattice mesh too - worth it if they can do as gives you a more natural droop, it's like an internal bra 🙂 Lins xx
Hay123
Member

Re: diagnosed with DCIS today.....shocked

Hi cath
yes the same surgeon will do uplift, on NHS they wouldn't do it same time as wanted to deal with DCIS first, I could of had it done by now but in off to America and wanted to fill ok for that. I'm meant to have it done in September. Any more questions just ask xxx take care Emma x
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Re: diagnosed with DCIS today.....shocked

Oh Cath, your post is heart breaking and here I am feeling sorry for myself waiting for the start of chemo following surgery for a high grade DCIS, thankfully I don't need a MX but would have agreed, if it meant avoiding chemo, no such luck. i understand completely about how all this will affect you physically and your relationship as I have only been with my OH less than 18 months, but he's great and very supportive.

As the girls said, you have something to look forward to which will be a great incentive for you, I really hope you get through everything well and as best you can.

Big hugs

Trish x
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Re: diagnosed with DCIS today.....shocked

Hi Cath,
You are a great example to all of us, yes we are all in a horrible position or a club nobody wants to join, but losing a child is probably the hardest of all, even more than a cancer diagnosis. I am about to start Chemotherapy with a Grade 3 tumour and i think i read your posts in the 'Waiting for Results' which i posted in whilst i was waiting. I really hope you use your wedding as an incentive to get better, we all need goals to aspire to and that is definately one worth waiting for. Good Luck and hugs to you and all ladies on this horrible journey xxx
cath4512
Member

Re: diagnosed with DCIS today.....shocked

Well girls, your support is amazing.
Thanks Em for all the info, I will look into the strattice implant.I will also read your blog...a bit of bedtime reading there I think 🙂
Pauline, I am so looking forward to Jamaica & just hoping that I will feel body confident enough by then x
Lins, you have reassured me that I will be looked after & that they realise that apperance id important.
Hay, Im so glad you are happy with your new boob :). Will they do the other one for you or do you have to go private?
I am thinking that as I already have implants that it may be easier to match them up lol.Can you have them both done together so they get them the same or do you have to wait?
Once again, thank you so much for all the help. You are all amazing. I hope you are all getting the help & support you need as well.
Hugs to you all xx
Hay123
Member

Re: diagnosed with DCIS today.....shocked

Hi Cath
sorry to hear you had the news today it was DCIS. It a awful time but the wait is the awful bit and now you know what you are dealing with. I like you was given a diagnosis of DCIS last November. Mine was in a big area and I agreed the best option was a mastectomy. I had this done at start December. I had implant with strattice mesh.The actually op is fine and the pain is handle with mild painkillers, its more of a tightness and uncomfortable than anything else. The swelling takes a while to go down but I'm over six months now and my boob looks fab, its taken a while to not feel it every moment but now it is soft and I hardly feel it. If you choose to have reconstruction my procedure and end result is fantastic. It's so much better than my real boob, look good in clothes.I am going to have a uplift on good side to even me up. I know everything seems so hard and I know so well how you much be feeling but you will find a sence of calmness, I think you have to. The hospital will take care of the DCIS and you can move on and look forward to your lovely wedding. I hope this helps in some way xxxx
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Re: diagnosed with DCIS today.....shocked

Cath I just wanted to say the support you get from the medical team is truly amazing. I'd chosen to go for DIEP reconstruction that uses your tummy fat (in fact it's the same op as if you were going to have a tummy tuck, so I thought I might as well get something out of it!) Anyway - amazing - they said I didn't have enough fat for this atm BUT if I wasn't happy I could always come back and choose a different operation (ops like the DIEP are a one go only - so really the surgeon was saying I don't think this will work for you now, but you can always choose to come back and have it done). I've had an implant instead, and yes they are different when naked but not bad - I had skin saving too, so this means I can wear really low tops (as low as I've ever dared to wear before) and no one else would notice. The after care team also said if anything (from a small dimple to a bulge where it shouldn't be) to come back and they'd sort it. They look after your feelings about appearance (obviously I was to go back if their was a medical problem, but nice to know if I just wasn't happy I could return). Big hugs, great support here. Lins
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Re: diagnosed with DCIS today.....shocked

Cath - I don't really know waht to say, what a torrid time you have had. Guess I just wanted to say that I got married in Jamaica 2 years ago and it was the most fantastic time. You will have such a special day and something positive to focus on while you are going through this BC rollercoaster
Pauline x
spookymoo
Member

Re: diagnosed with DCIS today.....shocked

Oh Cath, you really have been through the mill. You have had had so much to deal with and now this. Sometimes life is really poo, isn't it?
I am sure your partner is being very supportive and just wants you well again. My hubbie said he didn't care what I looked like, as long as I stay alive (if only to nag him to death!). But it was important for me to feel like a woman . It is quite ironic too as I have always been very small busted (a B Cup). Always wanted them bigger and never got round to it. Never will now! I try and keep some semblence of myself when I go to my appointments though - always wear make up etc - as I feel it is important - hopefully the consultants and hospital staff will see that I take care of myself and they will in turn take care of me (although my hair, which is growing back now after chemo, is letting me down - I look like a cross between Liam Gallagher and some 80's throwback with dodgy mullet cut - don't dare cut it though in case it doesn't grow back!) .
It is important for your job and for you to look good. And your surgical team will respect that. It is part of their remit to do the best for you cosmetically. I have started this process and I hope that by the end I will look a bit more like myself again. As you have already had implants, this might be the best for you cosmetically. Some hospitals are able to offer the "strattice" implant (which is made from pigskin as it mimics human tissue and rejection rate is much lower). The strattice implant is a bit like a hammock and therefore creates a natural looking breast with a "droop" that mimics your own curves. It is a much quicker procedure - only usually a day or two in hospital, and does give very good results. You may want to see if this is offered at your hospital when you see your surgeon? I was not suitable for this as I kept getting infections (because of all the other procedures I had previously) but you may be a suitable candidate for this and it may be worth you investiagting. You will find details of this I am sure in the BAPRAS literature. You have plenty of time now before your wedding to get the surgery done and get back to "normal" and move on with your life.
Telling people is very hard, really really hard. I had to tell my kids (14 and 11) and that was really rubbish. But your loved ones will rally round you and help you and support you - you will be amazed. I am so sorry you have this to deal with as well as losing your parents and your daughter - that must have been the worst kind of pain - unimaginable - you sound like a very strong person to me so I am sure you will get through this. Good luck with everything - I hope the hospital give you all the info you need. If you would like to PM me at any time please do. And if you get the chance to read my blog, I hope you enjoy it (I find my sense of humour is the only thing that has kept me sane so it is a bit flippant I am afraid and a bit sweary - you have been warned!). Big hugs and thinking of you. Em x
cath4512
Member

Re: diagnosed with DCIS today.....shocked

Thank you lins & Em you have helped loads already. I will read the blogs over the next couple of days.
I have to tell people now & that wont be easy.
I have breast implants which I had done 4 years ago.They are not big, just natural looking. I went from a AA cup to a D cup.
I am a fitness instructor & personal trainer so what I look like is part of my job. I am really struggling with this. I have had a really bad few years & thought things were getting better. I am getting married in November in Jamaica. We have been together 5 years, so I am wondering how it will affect my whole relationship as well.
In the last 6 years, My Mum & Dad both died & my daughter aged 21 died 4 years ago. This is like the straw that broke the camels back.
Thanks you so much for your support. I hope you got as much when you were first diagnosed.
Hugs to you both xxx
spookymoo
Member

Re: diagnosed with DCIS today.....shocked

Hi Cath I am sorry you have had this news. It is horrible and a cancer diagnosis is very upsetting and scary. I was diagnosed with Invasive Ductal Carcinoma last year and had 5 months of chemo to try and shrink the tumour. My consultant was confident that I would get away with a WLE after this. I had a WLE and also full lymph node clearance (left breast) in February this year but unfortunately it did not achieve clear margins and a re-excision in March found another tumour and more high grade DCIS. So I had no choice but to go down the mastectomy route. I was devastated at first but having had all the worry that there was still cancer in there, not having achived clear margins (twice) and also a very dodgy looking breast (due to surgery and scar tissue and seroma's etc), I actually came to think that this was a better plan, as long as I could have an immediate recon. Luckily I was able to, and had my mastectomy and DIEP procedure at East Grinstead at beginning of May. I am happier than I thought I would be with the result, and very relieved that hopefully all the cancer has now gone!
I am sending you the link to the BAPRAS site : http://www.bapras.org.uk/ - this is the site of the British Association of Plastic and Reconstructive Surgeons - this has some very good information on the different types of reconstruction that are available. It is a bit of a minefield - you have the choice which is difficult - I told my surgeon "Given the choice I would not have breast cancer and not have to have bits amputated" which didn't go down too well but was how I felt at the time! I found the surgical decision harder than the chemotherapy decision, but five weeks on (and with complications to boot!) I am happy that I went with my choice and pushed for a DIEP. The recovery time is longer, but I think it was the rigjt decision for me. Your BCN or your surgeon should also be able to provide you with pictures of "before" and "after" so that you can see the cosmetic result.
Like Lins, I have taken to writing ablog, which has helped me with my feelings on this journey - which has definitely been a rollercoaster, If you want to read it (it is quite anarchic and dark and satirical) you can find the link to it on my Personal Profile page.
It is not vain to worry about what you look like. Breast Cancer (in whatever shape or form) is scary and it takes away your control. It can make you feel less of a person. And I was in shock for weeks and weeks! I have found it hard to deal with - the loss of control and my whole life has been turned upside down. Having a reconstruction has helped me a bit with these feelings, because at least I felt I could take some control back. You have to deal with things in your own way. Some ladies prefer not to have a recon. I can understand that too. I didn't want to keep having lots of surgery (i I have had 6 lots of surgery since February!) and just wanted to be done, so I was lucky I could have an immediate recon, as really didn't want the thought of more operations in 12 months time!. Also, I am quite young (44) and have a hubbie and children, and having put them through so much, it was important for me that I started to feel "normal" again.
You are entitled to have a recon and you have a choice. Take your time however. Make sure you get all the facts about the different types of reconstruction (not all may be appropriate or available to you). Find out about your surgeon - how many procedures like this has he done? Try and speak to someone who has had the procedure done at your hospital (your BCN should be able to help with this) so that they can give you a first hand account of everything. If you have DCIS, you hopefully will not need any other treatment other than the mastectomy - which is rubbish, I know, but hopefully you will not need radiotherapy or chemotherapy. Wishing you all the best on ths "journey". I hope you get the answers you need. Em x
Guest user
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Re: diagnosed with DCIS today.....shocked

Hi Cath.. been in exactly the same boat. It's a roller coaster. I've had a reconstruction and actually the after op feelings are much calmer and much more accepting than the pre-op. I've blogged about my journey. I am more than happy to support you if I can, (being further down the same road as you). I'm about to start chemo tomorrow so am rushing around today and may not be about for a few days (who knows)... but I've added you as a friend.

As I don't have time just at the mo to write in great detail I though you might find this interesting (it's not compulsary to read lol, only if you think it may help).. http://multigen.blogspot.co.uk/search/label/Breast%20Cancer

Huge, huge hugs. Take one day at a time. Lins
Jo_BCC
Member

Re: diagnosed with DCIS today.....shocked

Hi Cath

I'm sorry to learn of your diagnosis and just wanted to let you know that there is a lot of good support out there for you. BCC's helpline team are just a free phone call away if you need someone to talk things through with, 0808 800 6000, lines open 9-5 Mon-Fri and 10-2 Sat.

I have put for you below links to some of BCC's publications you might also find helpful.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-reconstruction-bcc7

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-...

I hope this helps. Take care,

Jo, Facilitator

cath4512
Member

diagnosed with DCIS today.....shocked

Hi to everyone.
I have posted a couple of times in the waiting for results forum & now, unfortunately, I am posting here.
I have DCIS in a large area of my right breast. The Dr & BCN spoke to me today & said it was likely that I would need a mastectomy. I see the surgeons on Wednesday ( in 2 days ) & they will discuss it with me. The BCN said I may be able to have immediate reconstruction. I am worried about the cancer & also about what my breast will look like.
Is it vain to worry about what it will look like? I am still in shock to be honest & I keep crying. My head is all over the place.
Does anyone have a link to ant pics of reconstructed breast surgery please xx