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Just diagnosed with widespread DCIS

25 REPLIES 25

Re: Just diagnosed with widespread DCIS

Hi girls,
I'v been reading through all your posts with interest.
I am on day 15 of first Chemo dose FEC-T. I have invasive in left & widespread DCIS in both breast & left Axillary nodes. Masectomy is on the cards with immediate recon. I've go meet with surgeon in april. I am a bit confused about all the options out there re mascetomy & recon. somewhere along the line I am to get radiotherapy, but don't know when yet. Can anyone advise or share - Who had what,I know there are many types using your own muscle, tissue, implants etc. I am a small frame - right now only 7st 7lb, have lost over a stone in last 6 months, but had digestive/bowel problems for years.so not much in th way of spare fat/tissue! My bust naturally was a 36B, now about 39AA!!! Never been bigger than as size 11, my sisters & brothers are all big and have always said I must have been adopted! Lol. Any insight would be welcome! x

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Re: Just diagnosed with widespread DCIS

It definitely helps and Im sure whatever we come up against, someone on here will have gone through the same thing.

Jayne xx

Re: Just diagnosed with widespread DCIS

Hi babes367

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good support from the many informed users of this site.

To help you along I have put for you below the link to one of BCC's publications you may find helpful. Also, if you feel you need someone to talk to the helpline staff are here to support you. Calls to the helpline are free, 0808 800 6000, lines open Mon-Fri 9-5 and Sat 9-2.

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

Hope this helps. Take care,
Jo, Facilitator

Re: Just diagnosed with widespread DCIS

thanks jayne for your comment thought it wouldnt harm to see if anyone has any similiar experiences to me figured it may help xx

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Re: Just diagnosed with widespread DCIS

hi babes

Im sure you are feeling lost and confused, we all are when we arrive here. Like you, mine was completely unexpected, in fact I went for discomfort under my right arm and they found it, when doing a mammogram, in the left!! I too had a high grade DCIS, its gone now and Im towards the end of my radiotherapy.

I have found that once you know exactly what you are dealing with and the treatment plan starts, you end up going with the flow, with a few wobbles, which the lovely ladies on here help you to deal with.

Good luck on Tuesday.

Jayne xx

Re: Just diagnosed with widespread DCIS

not sure if this is how your meant to do this but im in total shock at moment i've gone from a fnac and discharge cos doctor was sure it would be benign then a core biopsy to a mammatome and then an excisional wire guided biopsy to a diagnosis of higher grade dcis all margins involved dcis was diagnosed on the mammatome going for sentinel lymph node biopsy on tuesday im feeling a little bit lost and confused about everything

Re: Just diagnosed with widespread DCIS

If you're thinking about an immediate reconstruction, just ask your team about the risk of invasive cancer in the reconstructed breast. Some surgeons/oncologists suggest you have the mx, then wait 6 months just to check that all the suspect DCIS really has been removed.

I think the figures are really, really low, but I didn't realise there was any risk and felt uncomfortable that I made the decision without knowing.

I'd be interested in the response.

Annie

Re: Just diagnosed with widespread DCIS

Hi Lesley
Thank you for your support
Hi BigBird
Thank you for your reply, i agree it's good reading other people's experiences it reminds me I'm not alone.
Gillian xx

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Re: Just diagnosed with widespread DCIS

Hi Girls,

I know it all seems really difficult at the moment, as I went through the same. My experience started last May when I had nipple discharge from my left breast. After being referred in June nothing showed up on the mammogram and I was put on a 3 month waiting list for a lumpectomy being assured it would be a non malignant papiloma. Unfortunately my op in October showed DCIS with positive margins and so I went through a further two ops in Nov and Dec. Jan I was told I needed to have a LD flap Mx with immediate reconstruction which I did at the end of the month. Im now 4 wks post op and although I felt like I'd been through a 'wringer' I feel so much more positive now.

I was in hospital for 7 days, mine mainly due to needing a blood transfusion as well as having a large amount of seroma. I had 3 drains which they removed on my last day. I have needed to go back to have my back drained twice however things seem to be settling down now which is great.

I found my hospital stay quite emotional mainly due to it being a big op and simple things like moving in bed difficult at first but thats normal and things improve every day. You will find that you wont have the mobility in your arm which again I got upset at but I can honestly say, stick to your exercises afterwards and it will improve in no time at all! 4 wks on I'd say I have about 80% mobility again. For me, I'm 41, its now about getting my fitness back and building up the back muscle again and although you may get frustrated take all the help and assistance you can no matter how small the job. It also makes those around you feel like they are doing something to help and I've really appreciated all the help I've been given.

I'm one of the lucky ones as I had my results 2 wks post op and found out that I had wide spread DCIS in all four quadrants though it was non invasive so won't need to have any radio/chemotherapy. I'm not due to see my consultant now until the end of March at which point I'm hoping to find out when things happen next though this is likely to include a replacement implant or having the valve removed on the expander implant I have in now. Then later I'll the nipple replacement. One thing I have to say is that despite the length of my scars there should be an award for the best stitching which I would happily put my surgeon forward for. Absolutely brilliant work!

I have whittled on a lot but I know it was important to me to read about others experiences before I went in and hopefully this might be of some help? Good luck and let us know how you get on

BigBird xx

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Re: Just diagnosed with widespread DCIS

Sorry to hear you are feeling low this week Gillian though it is only to be expected given the situation you are in. My recommendation would be that you try and fill your weekend as much as possible t take your mind off it all and make the most of doing as much as you can now as any surgery will slow you down for a while.
Take acre and will be thinking of you on Tuesday
Lesley x

Re: Just diagnosed with widespread DCIS

Hi

Been feeling low this week. I think it has finally hit me, what I have and needing surgery. Feeling rather weepy. I'm trying to stay positive for my daughter and husband. When asked how am I, I just say fine thank you. I'm nervous about seeing the surgeon on Tuesday but I suppose once I know about the surgery I'll start to feel happier.
Sorry for the rant
Gillian xx

Re: Just diagnosed with widespread DCIS

Wendy, good luck to you to for the 28th.
Lelly61, I know, once I know what's happening I can start to move forward. It seems the waiting and not knowing is the worst bit.
Take care
Gillian x

Re: Just diagnosed with widespread DCIS

Hi Gillian,
Thought I would mention, I have the same date as you to see the plastic surgeon too, to discuss MX reconstruction too, awaiting results of SNB biopsy too hopefully will get results of that too, and get a date like you.
They have so far suggested re con using my belly, as they dont like doing re con with implant as radiotherapy may be required.
Good luck to both of us for the 28th !!
Wendt x

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Re: Just diagnosed with widespread DCIS

Good luck Gillian
The waiting is by far the hardest, once you know what needs to be done you will cope much better and the various appointments will keep you busy..
Take care
L x

Re: Just diagnosed with widespread DCIS

Hi
Just thought I would update. I have an appointment on 28th Feb to see the surgeon and plastic surgeon, hopefully they will be able to give me a date for the op. xx

Re: Just diagnosed with widespread DCIS

Hi lelly61
Thank you for your reply, its good to read other peoples experiences. Just waiting for an appointment to see the surgeon.
Gillian x

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Re: Just diagnosed with widespread DCIS

Hi Gillian
I can fully relate to how you feel. I too was diagnosed with widespread DCIS at the end of November and was in denial for some time as I had no outward symptoms and didn't feel ill.
As it was widespread, my only option was also an mx and I was offered immediate recon. My options for the recon were limited though and an implant was the only option. As with Lynette, not having the option of lumpectomy first was actually a relief as I personally couldn't have faced the thought of additional ops if margins weren't clear and I know that all the cancer has now gone.
Anyway, I finally had my op 30th Jan. I had a massive haematoma a few hours after surgery which meant I had to have a second op withi. 24 hrs to clear everything (please note though that this is very unusual and I have only mentioned it to help with context regarding healing time). I ended up therefore with 3 drains and stayed in hospital for 7 nights, finally leaving hospital with 1 drain that I kept a further week. I am a DD cup so had the biggest Becker implant possible. It is also a permanent expander so I can choose to keep it at the end or swap for a fully silicone one. I will also need a reduction on the other side to match up in about a year.
Coming out of hospital with some sort of cleavage was unexpected but really helped. They give you a softie that you can adapt as your implant fills up. My surgeon will wait until I am fully healed and ready mentally before he starts filling me up.
I am healing very well and although I lost my nipple due to where the DCIS was, it still feels like me as all my own flesh there. I have also been very lucky not to have a seroma and think that may be partly due to keeping the last drain longer than normal.
It does feel strange, especially as the implant is so pert... There are a number of strange sensations but I am assured that this is normal as your nerves and muscles repair themselves, after all it is a major operation.
I do have a lot of sensitivity at the top of my new boob but think that may partly be due to the haematoma I had. That said, I can press down on the area and there is no pain but if my hair or my top rubs too much, it gets uncomfortable. I am told this will pass and that there are meds that can help while the nerves knit back.
I have been on normal painkillers for the last week and, as long as you take them regularly, they help reduce most irritation. I honestly don't think it is pain now, just discomfort that will pass.
Apologies for all the waffling but hope this helps you understand a bit more from an implant only perspective. As you will see from other postings, there are a variety of options and it all depends on the individual.
Good luck with everything and let us know what you decide and how you get on.
L x

Re: Just diagnosed with widespread DCIS

Hi Lynette,
Like you I'm glad the consultant told me I had to have a mx. I am still in shock I think because I don't feel ill it doesn't feel as though it is happening. When I talk to friends and family it feels as though I'm taking about someone else.
Im glad I found this forum it is so helpful.
Hope you have a relaxing trip
Gillian x

Re: Just diagnosed with widespread DCIS

Hi Gill,
I was diagnosed with the same as you, in left breast, end of august. What a bombshell! I was n total shock so you are doing very well.

When surgeon advised a mx because it was widespread and high grade, I was actually relieved though, because I didn't know how I would make the choice if a Lumpectomy had been an option. My surgeon seemed to push implants a bit, but I guess because that was the limit of that hospitals capacity. She did explain the other types though, and when I chose a DIEP flap, she referred and introduced me to a very good plastic surgeon.

The actual mx and recon only took 6hours as the original surgeon did the mx and the PS team did the recon at the same time. I was in hospital for a week so all drains etc out when I came home, and two days later all dressings taken off. Only had 6 actual stitches and they came out with the dressings. The other wounds were internally stitched then glued I think.

I went to dinner at friends on day ten after op, walked to the local pub on day 12, to a football match after three weeks and drove at five weeks. I see it as a refilled boob rather than losing one. It's still a bit bigger than the other one, but looks very similar and I'm intending to have a nipple created as soon as I can.

So, it's three months post op now, I'm off on hols to sunny places this week, small bikinis are packed as my tummy scar is under their line and I now have a very flat tum and lovely tight navel! Then back to work when I get back. Good luck and you can pm me if you've got any questions I can help with.
Lynette

Re: Just diagnosed with widespread DCIS

Hi Deed and Annie, thank you for your replies there is so much to think about. Its good to read others experiences. I will get a v pillow anything that will make it abit more comfortable. Im a size 34a so not alot to work with.I'm starting to write a list of questions to ask the surgeon
Thanks again
Gillian x

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Re: Just diagnosed with widespread DCIS

Hi Gillian
I was 41 when diagnosed with widespread dcis. I had a mx with an immediate ld flap recon with implant and a reduction and uplift on the good side at the same time. Im a 38dd so needed the implant.
I was in hospital for 5 days and it really wasnt as painful as i expected. Anticipation is FAR worse than the actual procedure!!!
I would recommend you buy a V pillow and take it into hospital with you - it was an absolute godsend for me!
write down any questions that you have before you see the consultant because you will always forget things once your in there!

any questions, no matter how silly they may seem then please ask.

best of luck

deed
x

Re: Just diagnosed with widespread DCIS

I had my mastectomy and LD flap reconstruction and was also back at work after 6 weeks. Sometimes it isn't an either/or for implants. I needed an implant as well as LD flap as I didn't have enough body fat to make a breast the right size, so I have a small implant too. (I am a 36D)..I could have had a small new breast then had the good one reduced in size to match, but chose not to do that. What I will say is that I was shocked that I couldn't use my arm at all after the op; couldn't even clear my teeth - but it is surprising how quickly everything starts working again.

Good luck
Annie

Re: Just diagnosed with widespread DCIS

Hi again Gillian,
I was in hospital a week (I live alone so they kept me a few extra days) and quite limited for a couple of weeks. I was driving again after 6 weeks and back at work after about eight (could have gome back earlier but chose Easter Sunday as it felt symbolic... privilege of my job!). I had to work hard at the arm exercises (though you probably won't have as much impact as you won't be having axilary lymph node clearance) bit it was worth it.

Glad your husband is going with you, it's so useful to have a second pair of ears to hear what they say and catch the bits you miss.

Have a good weekend and try not to worry.

Re: Just diagnosed with widespread DCIS

Hi RevCat

Thank you for your reply, there is so much to think about. My husband will come with me when I see the surgeon he always is good for asking questions. I'm hoping to have a call Monday from the nurse with an appointment. At least when I have seen him I can get things straight in my head.Can I ask how long was you recovery time?
Gillian x

Re: Just diagnosed with widespread DCIS

Hello Gillian,
So sorry you have to join the club no-one wants to join, and please don't apologise for starting a new thread, it's often the best way to be noticed.

I expect when you see your surgeon s/he will give some very clear guidance on the best reconstruction option, though the choice will be yours. Dependent on what other treatment they might want to offer, sometimes there are options that aren't advisable - though for DCIS this is probably not so.

Any recon option has its pros and cons and you will need to decide what is best for you. I had an LD (back muscle) flap without an implant (the only option my surgeon would offer me as immediate, I was due for radiotherapy and too slim for a DIEP or TRAM flap) and have been pleased, with the result, but it does leave some scarring and residual weakness in my affected arm. Part of her argument is that flap surgery is once-off for life, whereas implants have a design life time and may need to be replaced at some future date.

You could ask you surgeon to show photos of his/her work so you have an idea what the reuslt will be. My surgeon gets LOADS taken every time I see her!

If your gut/heart is saying implant and your surgeon is OK with that, then it's probably going to be the right choice for you.

Hope all goes well, you get a great result and a long, healthy life afterwards.

Just diagnosed with widespread DCIS

Hi

Sorry to start another post i wasnt sure where to put my post.I have just been diagnosed with widespread DCIS, it has all been very quick from my first appointment at my GPs to seeing the breast consultant was just 2 weeks. The consultant has told me I will need a mastectomy with hopefully an immediate reconstruction. I am still trying to come to terms with it all. I am 42 and have a 17 year old daughter and a very caring husband. I am just waiting for an appointment to see the surgeon. I have been reading through the booklets the breast care nurse gave me and I'm thinking about having an implant, can anyone give me any advice.? I feel lucky it has been caught early and I have been told I won't need chemo but I still feel numb. Sorry for rambling on. Sending hugs to all
Gillian xx