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Diagnosed with DCIS today

19 REPLIES 19
Guest user
Not applicable

Re: Diagnosed with DCIS today

Hi Jules
I was diagnosed with DCIS after reporting a tiny lump in February. Nothing was seen on mammogram or ultrasound but I had a biopsy. When it came back as abnormal I had WLI in March but the margins were not clear and I was advised to have a mastectomy to prevent it becoming invasive as I have a strong family history of invasive breast cancer. I had no problem deciding to go ahead with it and couldn't get there fast enough as the cells were mid and high grade. I just wanted to be free of it. I am 67 and the idea of losing my breast did not concern me greatly once I had got over the initial shock. The operation in April was quite straightforward and I was home the next day. The eventual size of the DCIS was 9cms in total.
I was not interested in reconstruction. I am size 36C and I get on well with the prosthesis. More difficult has been the decision to go for a 2nd MX in 2 weeks time to further reduce the risk of breast cancer in the future. My surgeon was quite willing to do this. I can honestly say I do not fear the operation and I can put it all behind me after a few more weeks and will just have to get used to being completely flat and managing the contact prostheses. You do get lots of support too.
Definitely go for the holiday. The nice memories will be a distraction from those rather boring exercises they get you to do after the op!
Congratulations on the big 50 and enjoy the holiday.
Erica
skigirl
Member

Re: Diagnosed with DCIS today

Hi Julie

Absolutely, definitely go on your holiday!! As your consultant has said, there is no real rush, which I guess is one 'up' side to DCIS. And if you're like me, you will not really feel like it afterwards. It took me a little while to start to feel anything quite like normal afterwards. However, that said, I was back at work 7 weeks after my surgery. But I did have quite an emotional time afterwards too (as well as the tears before hand 🙂 ).

It's good that you're feeling positive. I think it will help in your recovery. I tried to keep positive before the op, and I kept telling myself that I considered myself to be quite lucky as this had been found before it turned into anything nasty.

Let us know how you get on on 12th.

x
Guest user
Not applicable

Re: Diagnosed with DCIS today

Thanks for your reply Mandy
I am seeing my breast care nurse on 12th November & she said by then she should have a date for me for my op.
My consultant has told me to go on the holiday we have booked at the end of the month to celebrate my big 50 & I will have surgery before Xmas as its pre cancerothese said delaying surgery will be ok.
I have had a few tears moments since Wednesday but am feeling positive about things.

Julie
skigirl
Member

Re: Diagnosed with DCIS today

Hi Jules2807

It's an awful thing to hear that you have DCIS and what a decision it is to make to decide on a mastectomy. I was in that situation in February of this year and opted for the mastectomy too. I simply couldn't take the chance that it would turn into anything nastier, and invasive.

I had the operation, with an immediate reconstruction in April and 6 months down the line, I am still happy with the decision that I made. Unlike you, they were able to use my stomach area for the reconstruction, so I can't offer any advice on the implants, but if you're having a skin sparing mastectomy, then the appearance should be good. Anyone that doesn't know what I've been through has absolutely no idea that I have a reconstructed breast. I am able to wear low neck tops and I have just as much confidence now as I had before my operation. The 2 breasts are not identical in shape, but you can only notice this without clothes on, and I have found a wonderful bra that hides any minor imperfections.

When are you scheduled to have your operation? I hope that all goes well for you, and if I can help with anything else, just let me know.

Mandy x
Guest user
Not applicable

Re: Diagnosed with DCIS today

I have been diagnosed with DCIS today & will be having a mastectomy.
i have been advised that I can have an implant but cannot have reconstruction surgery as I have operation scars on my stomach so cannot use that area & as I suffer with ME the consultant doesn't feel that the back area surgery would be advisable.
i am just so grateful it has been caught early as from going to my gp to this appointment (with initial appt & core biopsy done too)it has been 24 days.
any advice would be welcome.
Lucy_BCC
Member

Re: Diagnosed with DCIS today

Hi Katy, welcome to the BCC forums where you will have a wealth of support and shared experiences from your fellow users

Our helpliners are also on hand to offer further support and information on 0808 800 6000 and lines are open 9-5 during the week and 10-2 Saturdays

I am posting a link to the 'treatments' section of the BCC site where you will find further information and support services such as our 'Live chat:

http://www.breastcancercare.org.uk/treatment

The thread you have posted on is DCIS/LCIS which is a different BC to yours, you may also wish to post on the following threads for further support:

http://www.breastcancercare.org.uk/community/forums/undergoing-treatment-surgery/undergoing-treatment-surgery

http://www.breastcancercare.org.uk/community/forums/newly-diagnosed-breast-cancer/newly-diagnosed-scared

Take care

Lucy

Guest user
Not applicable

Re: Diagnosed with DCIS today

Hi everyone,
l was diagnosed with Invasive Lobular Breast Cancer mid September and told after the initial biopsy that the lump was small and the lymph nodes were clear. Had the op on the 1st of Oct when the mass was actually three times as big as showed on the scan and 6 lymph nodes were removed during a sentinel lymph node biopsy.
Fortunatly the mass was removed with all cells around it clear but the cancer has spread to the lymph nodes and a second operation takes place on the 29th of October and then it's the full on treatment, chemo and radiotherapy to follow so know now its the long haul.
i have to say that so far, although its been a huge shock as I only found out through chance all the way, I can only praise the whole process and the people who have been fabulous, so if anyone is starting the process or at a similar stage then it is scary but I'm sure it's going to be "do able"
Especially with sites such as this one, to share worries and share positive outcomes.
Good Luck to everyone.
Guest user
Not applicable

Re: Diagnosed with DCIS today

Hi Capital
Sorry you have had to go thru this! I did not have the same reconstruction as you (had a DIEP) but I can tell you that 8 weeks is early days and that if you are worried why don't you contact the helpline here? I am sure they can reassure you and give you more a informed response 🙂

The lines are open weekdays 9-5 and Saturday 10-2, the freephone number is 0808 800 6000.

Hope someone else with your reconstruction responds soon. Keep up the exercises - they do help 🙂

Best Wishes

Liz
Guest user
Not applicable

Re: Diagnosed with DCIS today

Hi there. I was diagnosed with DCIS. I had mx on 20th August 2012 with immediate reconstruction. I opt for the muscle from the back ie making new boob together with implant. All has gone well. Now into my 8th week. Movements are getting a bit quicker but still feel as if I'm wearing a straight jacket because of the tightness from the back muscle. Doing excercise 3 times a day. Having to wear a very tight sports bra 24/7 is not too comfortable either, but hey ho. Please God I will get there. Is there anybody out there that can advise me on recovery time. I was lucky and didn't need any treatment.
Would love to hear from somebody who could comment on my situation!
LOL all capital. x
skigirl
Member

Re: Diagnosed with DCIS today

Good luck for the 27th. You'll be surprised at how quickly it will come around. If you need any advice, you're in the right place. There are so many helpful people on this site.

Take care xx
Guest user
Not applicable

Re: Diagnosed with DCIS today

hi everyone,
just to say I am going for a mastectomy on the 27th of this month,will let you all know how I am doing.
After reading all your helpful experiences I am feeling much calmer and more hopeful.
Thank you all so much
skigirl
Member

Re: Diagnosed with DCIS today

I too was diagnosed with multi-focal DCIS earlier this year and had a mx with immediate DIEP recon in April. As you know, it's incredibly daunting and scary, but for me, in the end, surgery was the only option. I had 3 lots of biopsies and just waiting for those results proved to me that I had to go for the surgery - I had become so paranoid that the BC was going to turn invasive overnight. It is a really tough decision to start off with, but one that becomes easier as the time goes by. I too feel lucky. Lucky that I was given the chance to decide what to do. I had the time to research what was best for me and to time my surgery to suit me and my family's needs. Lucky that it was caught before turning invasive. That said, it has been a huge rollercoaster of emotions - I have never cried so much in my life!! But with good support, you will get through it.
I too dreaded telling my family, and I held off for as long as possible - I needed to get things straight in my own mind before I hit them with the news. But by the time I got round to telling them (about 6 weeks later), I had a very positive approach to it all and I think that helped them through it.
I had my surgery on the Monday and was discharged the following Friday. I started going for walks to build my strength back up and it will be 6 months next week and I am now back playing badminton, jogging and I've booked to go skiing in February. So, it really isn't the end of the world and life does go on afterwards 🙂
I still have twinges and tweaks in my new boob, but I'm assured that this is quite normal and it can take up to a year to completely settle down.
Like nonsuch, my stomach is lovely and flat now. I have had 3 children, so I had an 'ample supply' (as the PS so politely told me lol), and I am now able to wear a larger variety of styles of clothes (also known as not so baggy!!)
Good luck to all
Mandy xx
nonsuch
Member

Re: Diagnosed with DCIS today

Loubee and other new ladies in waiting....
As you say it's in part of feeling of disbelief..this can't be happening to ME! I was exactly in your shoes a year ago ..in fact i went a year today for the results of all the extra tests I had to make sure it Was only DCIS...

I hated the thought of any op at all, hated the idea of scars as I'd never had an op. My, I was número UNO scaredy cat. It's helped me to think of anaesthetists as people doing an everyday job...it's special to us, but they do it day in day out...I was terrified of not waking up until I realised this!

Luckily the BC hadn't spread and I was able to have an immediate (not that immediate as was on the list for five weeks) mx and DIEP recon on my left side. I just wanted to share with you that it is doable and the result is impressive...the actual op length wasn't as long as you read, I wasn't in any pain and I walked to my local cafe 11 days after surgery... but it is true that it is quite a long road back to full fitness. My tummy is in better condition than for years and my refilled boob has no actual scars on it, surgery was all done through the aerola. I ve since had a nipple recon and a few other touch ups which were a doddle. I know I'm quite lucky that the BC was only DCIS and I also heal well.

Even if you need other treatment too, I'm in touch with lots of ladies who have successfully come through the various stages and then had a successful recon. It is about a year out of the old way of life but thats not so bad in the grand scheme of things and getting rid of the BC.

Good wishes to all embarking on the journey ...I still post here in case my experiences can help anyone through what is a lonely old time.

Big hugs! Nonsuch

Guest user
Not applicable

Re: Diagnosed with DCIS today

thank you so much to everyone who has taken the time to help me.Tomorrow I go for another biopsy maybe I will find out more then, big hugs to you all
Loubee
Member

Re: Diagnosed with DCIS today

Hi Aristos, so sorry you've had to join this forum. Your post is so similar to mine last week. I was diagnosed DCIS last Friday & had to have an extra core biopsy, (my 4th), last Monday. I have a tumour, within a duct that has cancerous cells at grade 2. The additional biopsy was to check several areas of microcalcifications that I have. Today, I found out that they were also at grade 2, so I will need a mastectomy.
This is how I had it explained to me last week: The thing is, if they leave tissue like the microcalcifications in the breast, they might become invasive: spreading throughout the breast and into other areas is as little time as 18 months, although in some people it can take 20 years. The easy option seemed like a lumpectomy, but if the other tissue does have early cancer cells, then you could be back in exactly the same position in 18 months time, so it isn't really the easy option in the long term.
I had my biopsy to double check the microcalcifications that had shown up and were inconclusive. I found out today that they are grade 2 and I will need a mastectomy: I've opted for immediate reconstruction. The next stage before this for me is to have a couple of lymph nodes removed and tested. If anything is found, I can't have an immediate reconstruction and will need chemo. So, fingers crossed.
It all seems so unreal and just horrible - are you thinking, "This can't be happening to me?" I am! But at the end of the day, the Drs want to make sure that they're not doing treatments and discharging you without removing all of it and ensuring that you don't get anything coming back.
Best of luck with it all: I hope we're all cancer free and off this forum soon. Best wishes, -xxxx_
Sam_BCC
Member

Re: Diagnosed with DCIS today

Hi Aristos

As well as the support you are receiving here it might be helpful to talk things through with a member of staff on the BCC helpline. Here you can share your concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

Brady40
Member

Re: Diagnosed with DCIS today

Hi Aristos, hope you are ok. I also have a recent diagnosis of high grade DCIS - although after multiple scans and biopsies mine seems to be confined to one area so I hade a WLE of the lump last friday.

I'm not sure why they would do another biopsy if they have said MX is required. I'm not being patronising but are you sure they siad MX was a definate? I know when it was mentioned in one of my appointments I found it hard to focus on anything other than that. Maybe it is an option but not a definate until they have the second biopsy results? Could you call your breast care nurse and ask her why the second biopsy is needed?

I hope you get some clarity soon - I've found the waiting and uncertaintly is absolutely the worst part. It uis much easier when you know for definate what you are doing - I hope you will feel like that too.
Suziex
Member

Re: Diagnosed with DCIS today

You need to ask the question why they said you will need a mx. I had high grade DCIS non invasive two years ago I wasn't,t told that I needed a mx, it was my decision to have a mx because I wanted to make sure I had clear margins I couldn't,t have coped having to go back the theatre. I also did not need any further treatment for the DCIS. I also opted not to have a reconstruction I have fully recovered go to the gym and play squash 3/4 times a week. I am sure the surgeons will answer all your questions and remember with DCIS you have time to make the right decision for you. Hope everything goes ok.

RevCat
Member

Re: Diagnosed with DCIS today

Hi Aristos,

Sorry to read your news, it is a very scary time. I can't answer your question about the second biopsy, but I am sure someone else will know the answer. You could also call the helpline, as they are very knowledgeable and helpful too. Right now it seems incredibly terrifying, but you will get through. Big hug.

Guest user
Not applicable

Diagnosed with DCIS today

hi everyone,have just been diagnosed with dcis today. I have to have another biopsy on Monday and they have told me that I will have to have a mastectomy.So why are they doing another biopsy.I have not told family yet, and dread telling them.
I am trying not to think too much,it all seems unreal at the moment but I have shed a few tears and I am feeling pretty scared.