DCIS newly diagnosed

[Jill1998]

Hello Justine ,it's very hard having to deal with cancer a second time (been there myself and it feels very unfair ) the good news is that this a very likely to be pre -invasive cancer and have a very successful outcome .My experience from talking to ladies on the forum is that they will not consider a double mastectomy lightly and you will be required to go through counselling first which will delay surgery ,but there are a number of ladies on the forum who have gone down that route .Good luck with your treatment whatever you decide. Jill xx

[Justine20]

I have been recently diagnosed with DCIS and told that I will have to have a mastectomy. They will also be testing lymph nodes and tissue to check it hasn’t spread. If so, prob radiotherapy. If not, trauma ends there. I had Hodgkins Lymphoma in 2005 (aged 25), 6 months of chemotherapy. Now aged 38 I here then words again. I have a hospital appointment next week to discuss the surgery/reconstruction if the faulty breast. But I’m considering pushing for a double mastectomy to be done with it. Just wondered if there’s any advise out there from anyone in a similar situation. Or who has undergone a kind of optional double mastectomy. I don’t even know if they will do it?

[Pepsi]

Hello jas58 tanks so much I will get the book ,i was told is DCIS no evidence of invasive all my results for ct scan and bone scan are clear,i think they just want to have those result in hand to know the best treatment to give.please how many hours does the operation take ?tanks xxxx

[Pepsi]

Hello Jobey68 sorry for late reply been busy with school work before my operation,yes am in london. Although no date yet for my operation but i have appointment at the hospital where it will take place.my bone scan result is out and is clear and praying for every other things to be ok after operation tanks love×××

[Jobey68]

Hi Pepsi good to hear you are feeling calmer and have got some answers, can I ask if you are in the UK? 

Just seems strange for them to do scans for DCIS as it can't have spread if it's not invasive but never mind at least it's been done and all looking good so far 😊 

Im sure all will go just fine, plenty of ladies here who have had mastectomies for various reasons and they will be abale to give you all the advice about what will happen Xx Jo 

[Pepsi]

Hello jobey68 thanks do much for your encouraging words and advice it really calm me down ,i ask y the scans and I was told is a normal checks and the result for d ct scan is clear just waiting for bone scan result .I also ask about the diagnosis it was DCIS insuit and it also came as non invasive ,Will be having a mastectomy and reconstruction praying for things to go well .lots of love and hugss××

[Jobey68]

Hi Pepsi, I'm so sorry you are having to go through at at time when you should be enjoying your baby's but we can only go with the hand we are dealt. 

Firstly as upsetting and confusing as it all is at the moment take a deep breath and get all the facts of exactly what is happening , DCIS is breast cancer within the ducts and CT and bone scans are not generally done with this diagnosis as it's is contained so would not have spread anywhere outside of the breast. 

If the diagnosis is invasive meaning it's in the breast tissue and not just the ducts then they may do further scans but although mine was invasive I didn't have any. 

I suggest calling the clinic and speak to a breast care nurse, ask her to explain your exact diagnosis to you and the reason why you have had the extra scans, write it all down so you can understand. The confusion you feel now won't help your state of mind, getting the facts really do help, don't be afraid to ask them you have very right to know what's going on.

its all to easy to sit like a rabbit in headlights at appointments and we don't ask the things we need too which leaves us coming away feeling even more upset and confused. 

It can all be treated that's the thing to remember and however insurmountable it may feel like now we've all been there and a lot of us are years out the other side , 3 years for me .

Arm yourself with as much knowledge as you can and lean on us for support, you will cope and get back to just being mummy again don't worry Xx Jo  

[Jas58]

Hi. Is it DCIS or breast cancer? You wouldn’t normally have a bone scan for DCIS as it is contained within ducts and hasn’t spread. I would firstly confirm the diagnosis with your BC nurse. If it is DCIS i can heartily recommend a book by Australian specialist called DCIS of the breast Taking Control by JOHN BOYAGES. It helped me a lot and others have found it very useful. Take care

[Pepsi]

Hello every1 i found a lump while i was pregnant but thought it was a milk duct after I had my baby it was still there so I book to see my GP and I was refered to a breast specialist went for mammogram on 22nd and biopsy I was diagnosis of breast cancer Dcis,my daughters are 22months and 7 weeks I can't remember what the surgeon told me as I was lost and shock,been crying seen that day because the doctor gave me 2 option mastectomy or reconstruction .Please I need someone to chat with as a worried about my kids they are still very very young and my partner 2 is so shocked .I went for ct scan on 3rd and bone scan on 4th July which is making me more scared ,i have app wit doctor 5th July to ask any questions and choose my options .

[Dizzybee]

Oh crikey, you have been through it, that sounds really grim. Hopefully the antibiotics will kick in now and you'll start to feel better.

Sending you a hug, hope you can take things easy and recover.

[Duggle]

Hi Dizzybee

You were right about an infection.  Its definately not been my week.  I went to GPs to get dressing removed, she said it was healing fine and the another dressing on and said to return in a couple of days well as the day went on didnt feel good at all.  By next morning my boob was enourmous and very red.  I rang surgery and they saw me again removed yesterdays dressing and put another on.  Got antibiotics.  Went home and spent the night feeling worse and coulnt wait for morning.  As soon as i ranf BC nurses i was told to go there they took one look and said it needed to be drained which was awful at the time but big relief.  Have been the last few days to get it checked then this morning it wasnt right so had to have a tube inserted to drain it into a bag.  So sick of it all now everday it has been something different wrong.  Lets see what tomorrow brings.  Theanks for advice on radiotherapy xx

[Dizzybee]

Hi Duggle

I think it's pretty normal to feel tired after surgery, but the temperature and vomiting doesn't sound right, I think you should talk to your BCN and your doctor just to check it isn't an infection. Your body has been through a shock, and it takes time to get over any general anaesthetic.

I found the worst thing about radiotherapy was the effort of getting there every day, and I also got quite emotional about the whole process. But I was very lucky in terms of side effects, I didn't get tired or sore.The best advice I would give is to make sure you have plenty of easy meals in the freezer and if you get offers of help, take them. 

Sending you a hug, I really hope you feel better soon, but think about getting a check up for the temperature and vomiting, I don't think that's normal after surgery.

Xxxx

[Duggle]

Well i had a wire guided WLE exactly 1 week ago.  Went in as a day case and felt ok the first day but every day since theres been something wrong with me, ive either been throwing up, hot sweats, pounding headaches just not felt well at all.  Hoping that this is the only surgery i will need but obviously i will need to wait for results.  I thought i would just be ok after a day or two but the least little thing i do i need a nap afterwards.Its definately not how i thought it would be.  Any good tips for facing radiotherapy?  

[girly888]

Dear Duggle, just wanted to say all the best for your consultant appointment tomorrow and it's good you have started to make a list of your questions.

I hope you will come away from the appt feeling a bit reassured and remember you can always contact your breast cancer nurse (BCN) if you have any further questions.

There is lots of information on this website and they also have the bit on the forum where you can ask the nurses.

Come back and let us know how you got on.

girly xx

[Dizzybee]

Hi Duggle

It is scary having to make these decisions, but your team is there to offer help and advice. If you only have DCIS you have a really favourable diagnosis, and the outcomes are pretty much the same whatever you choose.

Someone on another thread recommended a book about DCIS to me. It's written by a professor in breast cancer and has lots of advice on what to think about making these decisions. It's called DCIS of the Breast,Taking Control by John Boyages, I got mine from Amazon for my kindle. It's a hugely reassuring book, he calls DCIS a pre cancerous condition, yes it needs treating but it isn't full blown invasive cancer. And the book is very easy to read and understand, I wish I'd had it when I was diagnosed. It has quite a big section on the things to consider when choosing between WLE and mx.

I didnt have any problems with radiotherapy except it's a nuisance having to go five days a week for 3 weeks. I know some women do, but it isn't everyone. And even if you do get side effects it isnt likely to be all of them! 

It's a bit like the information leaflet that comes with a packet of pills, the list looks scary and if you worried about it you'd never take anything.

The important thing is to get information, and then make the decision you're most comfortable with. If you opt for mx there are loads of options for reconstruction either at the same time or at a later stage, or you might be happy going flat and using a prosthetic.

In the end I asked my surgeon straight out what he thought would give the best result and took his advice, and I haven't regretted it. So hopefully your team may be able to help you decide the best option for you.

This is a horrible stage when you're in such turmoil over being diagnosed at all, I cried over radiographers and BCNs and my poor husband all the time. But you do get through it and come out the other side, it all gets easier as time goes on, and eventually this stage is behind you. 

Sending you a hug, and hope your appointment goes well tomorrow.

Xxx

[Duggle]

Hi Ali I am feeling so lost and don't know where this will end. I am reading and researching as much as I can I really don't like the sound of radio therapy and the side effects but not sure if there is any other option. My surgery is planned in a couple of weeks so need to be sure I can make right choice xx

[Duggle]

Hi dizzy bee thanks for your reply everything is so confusing I don't think there was much said about reconstruction but I am getting a list of questions so hoping to become more informed . I just feel so rushed x

[Duggle]

Hi Girly I don't know what size it is I don't remember if they even told me. I don't know what's next as they want to do surgery in the next couple of weeks.
I don't know when I need to make a decision by. I do have another' appointment with consultants on Tuesday and have begun to make a list of questions but keep crying all the time and have a permanent headache x

[Ali49]

Hi Duggle, so sorry that you find yourself here and you have described exactly how we all feel at the beginning of this journey.

The waiting around and decision making is hard but you will feel better once you have a plan and know the way forward.

I will share my story with you.

I was diagnosed with high grade DCIS in Sept 2016. I was told i needed a lumpectomy and radiotherapy.
I had the lumpectomy and then had to have a cavity shave to achieve clear margins. I kept my nipple.
There was no invasive cancer found so i had 15 shots of radiotherapy and returned to work at the end of Jan 2017.

When i had my first post op mammo in Aug 2018 i was recalled as more calcifications were found. I had stereotatic biopsies. The results showed dcis but with a small invasive cancer. I had a ct scan and bone scans to check for any spread but thankfully there was none. My cancer was grade 2, er+ and her2+.

I have had 6 lots of chemo which finished in January and i then had a masectomy in February. I didnt know if i could have reconstruction due to having radio last time. But my skn is good so, as i wamted the quickest, easiest and most simple recon, i had a tissue expander inserted. I have had 50mls of fluid put in it each week and it will be replaced with an implant in 6 to 12 months. I will then have a nipple tattoo done. My surgeon has done an amazing job and i hardly think about it.

The results after the masectomy showed i had a complete pathological response to chemo and the cancer was gone. I had nothing in my lymph nodes.

We all have to make the choice that feels right for us. I wasnt given the choice of a masectomy the first time around but i do feel if i had had a masectomy then i might have avoided everything a year later.

Before my op my BCN told me to go and see and talk to the women in my local support group who had had masectomies with and without recon. I was reluctant to do this but was so glad i did. They were amazing, showing me there 'new boobs' and telling me about recovery etc. The results are amazing. If you have a support group near you try to go along before you make your decision. It might help. I go along on Tuesdays now to try to support others.

Good luck with whatever choice you make Duggle and rest asdured that your doctor and BCN will give you the best advice. The best advice i can give you is to stsy on this forum where you will get invaluable support and also try to Stay in the day.

Love Ali xx

[Dizzybee]

Hi Duggle

It's really difficult making these decisions when your mind is in turmoil with the shock of being diagnosed. It's now 22 months since I was in a similar position to you. I had 5cm of DCIS,  though mine was above the nipple so I didn't have to lose it. I had a therapeutic mammoplasty, which is effectively the cancer removed and the remaining breast tissue moved round to create a new smaller breast. I'm happy with the result, even though it had to be repeated as I didn't get clear margins.

It's difficult making these decisions, but I would say with hindsight that things tend to turn out better than you think. For example, the scars fade to become a faint line, it takes time but mine are not really noticeable now. 

If you have to lose your nipple, then it doesn't sound like having a mx is going to change that. There are some other threads by women in a similar position, they may be able to tell you about their decision. I do have a friend who had a new nipple tattoo, and is very happy with it, it's maybe something you could think about at a later stage. I think there are also surgical options to recreate a nipple, your surgical team should be able to tell you more. Your BCN may even have photos to show you, of mx and WLE.

When I was at your stage, my surgeon persuaded me to try a lumpectomy first, because I could always have a mx and reconstruction later if I wanted. But he thought the best cosmetic result would be from a WLE. So it may be worth asking what your surgeon thinks would give the best result for you.

Sending you a hug, this stage is horrible, when you're in such shock and turmoil. But it does get better, you will get through this and come out the other side, and there are many other women on here going through the same thing at the same time, you may find some real support from them. Good luck!

[girly888]

Dear Duggle, I am sorry you find yourself here - being newly diagnosed is I think the worst part, I certainly found that to be the case. But you will find plenty of help and support here from all the ladies who have been in a similar position. 

I had over 6cm of DCIS and was offered the same - wle or mx - I didn't rush to make a decision and the surgeons didn't rush me either so in the end I took the mx with immediate DIEP reconstruction and am very happy with it.

There are so many things to consider before making your final decision and you haven't mentioned the possibility of reconstruction - I hope you've been offered this with an MX.

I'm sure you will get some useful replies here - the most important thing is get all the info you can about the options available.

Can you tell us how large an area the DCIS is estimated to be?

with best wishes, girly x

[Duggle]

I need help I’m not sure where to start, I’m newly diagnosed with DCIS and completely shocked .  I had to decide on WLE of mx and I choose WLE but I will be losing all my nipple so am imagining a huge scar but have been told if margins are not good then I will def need mx. .  I am seeing consultant again this week as I couldn’t take anything in.  Shall I just change my mind and get a mx and just get it all over and done with ? How do people make these decisions.  It’s all I can think of.