High Grade DCIS

[MHaz]

Hi Megalermac

Will be thinking of you tomorrow. They are so supportive and will talk through your treatment plan step by step with you, if you think of any questions write them down to take with you. Lots ❤ xx

[ladybowler]

Megalemrac

WLE is wide local excision, it is breast conserving surgery x

[Megalemrac]

By the way, what is WLE? I’ve seen it mentioned a couple of times....

[Megalemrac]

I have been diagnosed with high grade DCIS. Surgeon thinks I might be able to have lumpectomy followed by reconstruction. He said mastectomy at first, but then asked the consultant plastic surgeon to have a look... so I’m going back tomorrow to see her again, she is going to show me some photos... I’m really feeling scared. Wish me luck that I make the right decision.! I’ve had a needle biopsy, and a vacuum assisted biopsy.

[lucaboo]

Aww thankyou Kitkat you are so positive about it all it gives me faith. I hope you have a wonderful holiday well deserved and a happy healthy life ahead...and also everyone who has taken the time to reply to my ramblings at time. Thankyou so much xxx

[Dizzybee]

KitKat, you're a real inspiration. You could be sitting around feeling why me, why did I have to be the one who got it again? And instead you're saying you're lucky it was DCIS again.

But you're so right that we all have a second chance to go out and pick up our lives and enjoy all the good things, because everything could have been so different. You don't need to go far on these boards to find women who have very different outcomes. So thanks for the reminder to concentrate on the good things and let the future take care of itself.

[Kitkat23]

Hi lucaboo

That’s good news with your results, I’m hppy for you!

as Dizzyboo rightly says you can only have radiation once In the Same area.

Your consultant is right about ‘rolling a dice’ but sounds like your treatment plan is designed to give you the best chances.  Talk it through with your bcn if it’ll help and write down all your questions, I know how easy it is to forget stuff when you’re anxious.

i didn’t have rads first time just WLE x 2 ( 2nd time to get a better margin ). Because the dcis was so small and so low grade and my age 46, I was told the risks outweighed the benefits.I don’t really think too much about odds because even though I was told I had a 2 to 3 percent chance of recurrence within first 5 years, it still happened.... after 6 years!  I think you get lucky or you don’t.  And I do feel lucky that it was pure dcis 2nd time round.

should I have pushed for rads last time? Should I have looked more into it and not just had blind faith in docs?

i don’t know, and what’s done is done, I guess I just think along the lines of.... I made the right decision a t that time... and just get on with enjoying life.

I was advised this time to have a mastectomy as area of dcis was large in comparison with small breast that had already had x 2 WLE,s, but I think I would have asked for one anyway.

last time round, I moved on pretty quickly with life, this time it’s not so easy, keep thinking will likely be back again?. But try to put it at back of mind ( am on tamoxifen to reduce risk of recurrence in other breast).

myodds this time for recurrence, I have been told, are 12 percent without tamoxifen, 7 percent with, but to me they are just numbers, people with far greater odds not in their favour, never get a recurrence.

I didn’t ask for odds, the doc just gave them.

I am trying to concentrate on the good things happening in life, not the bad things which might happen in future.

i am going back to work next month, I am a health visitor and although it’s a full on job, it’s greatworking with families and young children...where there’s new life there’s always hope.

I am going on a lovely holiday with my family in a couple of weeks.

i am getting a new bathroom fitted.... So exciting!,,

my eldest son is coming home for Christmas (he lives in Canada), and my daughters second baby ( I already have a granddaughter age 2.5 rs who i dote on!)  is due in December.

So life is good!

Good luck lucaboo!

x x

[lucaboo]

Thankyou Dizzybee, its a rollercoaster for sure mentally and physically. I hope you are coping well with any treatment you are having. Xxx

[Dizzybee]

Lucaboo, I think if there's a recurrence they normally say you have to have a mastectomy, because you can't have more radiation to the same area. But if you have clear margins, radiotherapy and tamoxifen, I think the risk of it coming back is about 5%, that's one woman in 20. And if it does come back, half the time it's DCIS again. So the odds are pretty favourable really.

[lucaboo]

Hi kitkat, hope ur doing well. I got my results this week it was dcis pure still contained in duct which dr was pleased. Thing is he said about it could come back in future or may not rolling a dice job, so he is treating me with rads 15 and tamoxifen 5yrs in case it does. What will happen if it does you can only have radiotherapy once and i would already be on tamoxifen so what options would i have? Do you have any idea kitkat or anyone else. I should of asked but u all know how it is in dr office whenbur stressed. Many thanks in adv.

[Dizzybee]

Lucaboo

If your DCIS was a small area and completely contained within one duct, that sounds very positive. It is only invasive cancer if it has broken through the duct wall into the outside area. The reason they don't do sentinel node biopsies for DCIS lumpectomies is because pure DCIS can't exist outside the duct, so it can't have travelled onwards to the lymph nodes, let alone anywhere further. (They do them before a mastectomy in case the pathology shows a small area of invasion, they can only find the sentinel node before the surgery.)

Waiting for results is very difficult, I was warned that there might be a small area of microinvasion because I had a large area of high grade DCIS with necrosis, basically the cells dividing so fast they can't get enough nutrients and die. But all was well, except the margins were tòo close, so I had to have another operation. But that was surprisingly okay.

I would echo what the other ladies have said, that these things are incredibly stressful while you wait for results. But in the end, whatever the outcome, the treatments are doable and often not nearly as bad as you think.

Sending you a hug, and hope you get your result soon.

Xxx

[Kitkat23]

Hi Lucaboo

Sorry you feeling so stressed.

I had a mastectomy in April this year and My surgeon said pretty much the same thing to me, which because of the high grade areas with comedo necrosis  was very very likely to have become invasive sooner rather than later, IF it had been left untreated.

My surgeon delivered this news immeadiately post surgery as a means of reassurance that he had not seen anything to indicate any invasive cancer (although obviously there are no certainties until after path results) and that I had been lucky that it was caught before it had had the chance to move out of the ducts.

Maybe your surgeon was doing the same? But I know some doctors don’t always communicate that well, maybe you could speak to your bcn for some clarification before your results appointment, which, I know, will seem ages ago.  I also know how your imagination runs away with you and you imagine the very worst.  The waiting is horrible.

DCIS is referred to as stage 0 breast cancer due to being non invasive but is graded differently to invasive cancers. It is graded low, intermediate and high.

In 2012 I had a WLE for a very small ( 4mm ) low grade DCIS which, at the time, my consultant said may or may not ever turn invasive.  I didn’t want to take any chances so had it removed.  The consultant (a different one) also came to see me post surgery to tell me it looked contained in duct, again I think, as a reassurance.  

So although I’ve had DCIS twice now, I still see myself as ‘lucky’ that both times it has been caught early and removed at the non invasive stage.  

I wish you the very best and hope you not waiting too much longer for your results

take good care x

[Jobey68]

Hi Lucaboo, 

Its all so confusing at this stage and it's the uncertainty that is the cause of our anxiety.

At the moment you know that your initial tests have show it to be DCIS but they cannot be 100% certain until it's removed and fully tested which is why they will have mentioned invasive, this basically means some of the cancer has grown outside of the duct.

I know it's sounds really scary to think you may have invasive cancer but most of us here have had , me included

. Try not to get yourself in a full blown panic about the what ifs, treatment for DCIS and invasive is often the same and until you get your pathology results you can drive yourself potty going over and over it and it's not going to change the outcome and will wear you down in the mean time. 

I'm 3 years on from invasive breast cancer, had a lumpectomy and radiotheraphy and am getting on with life, back then I was full of anxiety and fear just as you are but it gets better and you cope. 

XxJo 

[lucaboo]

Hi Dizzybee , i am  eally really struggling to undrstand this diagnosis. Its realy getting to me know.matbe u can help me uravell my thought process. My conformation lettter before wle said dcis high grade. It didnt mention stage etc. After the op surgeon came around and said it was small area still contained in one duct but if it had got out it would of been invasive. So now im worried to death ive got invasive cancer...or is it still in situ? Omg its making me ill he said it was a minor op . Ita drving me me mad. Can you or anyon eplease help ive  another 10days before pathology report. Many thanks for everyone who helps xxx

[Dizzybee]

I remember that so well, I used to say it felt like someone had taken a sledgehammer to my life! But somehow all the pieces have been put back together, and the same will happen for you, you will get through this and come out of the other side.

Xxx

[lucaboo]

Hit with a train lol x

[lucaboo]

Thankyou Dizzybee its feels like ive been hot with a train xxx

[Dizzybee]

Hi lucaboo 

It is hard to get your head round DCIS, but the the thing to remember is that it is not invasive cancer. My oncologist said he always refers to it as a precancerous condition, which they treat to stop it developing into cancer. So if your biopsy results come back clear, you're well on the way to putting this behind you. It's now two years since I was told I had DCIS, and really it's all behind me now. An annual mammogram, a tablet every morning, but no other effect on my life.

So sending you a hug, I know what a state of turmoil I was in at the same stage as you, but it will be okay and you will come out of the other side of this. The monthly threads for ladies doing radiotherapy at the same time as you were a real godsend, you know you're not alone doing this. And radiotherapy was really not difficult for me, it's an effort to get there five days a week, and you need to be kind to yourself, take plenty of rest and not push yourself to do anything you don't want to. But it is the final hurdle and after that you can start to pick up your life again.

Love and hugs

Xxx

[MHaz]

Hi lucaboo

Bless you, sending you love and hugs ... the waiting is hard, everyone on here are so supportive and reading posts really help with getting your head around things. I finished radiotherapy end of April and have a check up in July, am still healing and take each day as it comes, resting more when need to, and have a cry when need to too.

Sending you massive hugs back xx

[lucaboo]

Hi MHaz, i feel your pain. I too was diagnosed high grade dcis. In complete shock was told very matter of fact by doctor it was very treatable. Im not convinced. I had surgery lumpectomy dr said was still enclosed in duct but would be invasive if it wasnt. So now awaiting biopsyvresults in 2 weeks feel sick. Up to press got to have 15 rounds of radiotherapy. I know how you must be feeling its sonscary, first you read its curable, then you read its not. Im confused and scared too. Sending you massive hugs. Have you had a treatment plan yet?

[MHaz]

❤❤ All your support is helping me so much. ❤ & hugs to you all xxx

[ladybowler]

MHaz

That is totally natural you are just about to embark on what is your final part of active treatment, and like when we first started this journey it is a little bit fear of the unknown, it is not surprising that you will feel emotional, but mate you are so nearly there.

Isnt it wonderful to have the sun on your face, it just makes everything feel that bit better.  Dont worry we are all here beside you and will get you through.

Heres a pair of the tough pants for ladies who are struggling a bit, got big pockets so that we can all get in to support you, and hopefully will make you smile 🙂

Sending you hugs

Helena xxx

[Ali49]

There are lots of moments of feel8ng overwhelmes on this Journey Mhaz. They even happen when we have had good news and feel like we should be moving on!

Allow yourself to cry - you have been through a turbulent time xxx

[MHaz]

Thank you Helena ❤

Currently sitting in my local park so to feel the warm Sun on my face trying not to cry a little, finding things overwhelming. Fresh air is helping xx

[ladybowler]

Mhaz

Dont worry they will be very gentle and considerate.

If it is anything like mine, your planning apt tomorrow will consist of having a chat with the rads nurse about what will happen when you have your rads.  You will then go through to a room where they will do all the measurements that they need to do following the information they have been given from your oncologist. 

You will have some tattoes, which are for them to line everything up to when you have your rads.  It just feels like a tiny scratch. The CT scan is nothing to be worried about, the machine just moves back and forward over you for a few minutes

The other thing they did at my appointment was to give me a tour of the rads unit itself so that I could familiarise myself with it

Helena xx

[MHaz]

Thank you ladybowler / Helena 😘

I have had a little browse on the March thread to see sort of what to expect. Going for the ct planning scan tomorrow so will feel a little more at ease from then I think! Little worried as still feel really sensitive/sore but am sure it will all be very gentle!

Think my radiotherapy will start in April, will definitely join an April thread if see one as find the support on here so fantastic and helpful xx

[ladybowler]

MHaz

Well done, onwards and upwards now to radiotherapy.

There is a monthly thread on the radiotherapy section if you want to post on there when you have your date and I am sure you will get loads of help and support from the ladies.

Helena xx

[MHaz]

Thank you Ali49 ❤😘 xx

[Ali49]

Great news Mhaz! Delighted for you. During radio mske sure you drink 2-3 litres of water a day. Helps with tiredness and dehydration. You will be great xx

[MHaz]

Thank you Dizzybee and RoxanneT ❤😘

Best of wishes for tomorrow RoxanneT 😊😗

xx

[RoxanneT]

This is good news, it must be a weight off your mind.

Keep doing your exercises you'll need it for the radiotherapy, i start mine this Wednesday.

Best Wishes to one and all

[Dizzybee]

Mhaz

Great news,  I'm so happy for you, now you can really start to think about when the treatment ends, two months from now and you might be done. Now you can relax for a few weeks.

[MHaz]

Thank you loads ❤.

Got clear margins and radiotherapy starts in around 3 weeks time ... my head feels lighter now.

Thank you all so much for your support 😘.

Lots ❤ and sending well wishes to you all ❤ xxx

[Conorchloe]

Good luck witg your results todau MHaz x

[Ali49]

Good luck today Mhaz. Results days are alwa6s so hard. Praying its good news for you xx

[MHaz]

I've been feeling fine all day but now feeling anxious about tomorrow mornings results and feel wide awake! Hoping I'll sleep ok tonight! xx

[MHaz]

Thank you Dizzybee ☺ ... Not getting it as much today so am feeling it is the healing process. Am seeing my consultant tomorrow so will ask a bit more then too.

I forgot about the ask the nurse page on here, have just been looking on this forum link. I have now had a good look at the whole website and didn't realise how much is on here. It's sooo supportive and helpful.

Thank you again, take care xxx 💕

[Dizzybee]

Mhaz, it could be just the nerves repairing, I still get sudden twinges even after 18 months. But why don't you post your question on the Ask Our Nurses page, and get some advice from them?

I think part of this journey is having to deal with the worry about whether something is wrong, it's easy to be anxious. But some people do get infections so it's best to talk to someone, your BCN may be able to advise tomorrow.

Hope all is well, take care.

Xxx

[MHaz]

Sorry just a little worried!

Not only is the nipple area sore/sensitive but I've had a deep twitch on and off all day around the area that's healing! I'm feeling it's the healing process that's causing this? I have just started doing little things and don't feel I'm over doing it! Just hoping I haven't stretched things! xx

[MHaz]

Hi ... hope your all recovering well 😘

The last couple of days I've had an extremely sensitive nipple! Is this because of the insides healing do you think and did anyone else experience this too?

My results appointment is this Mon so feeling anxious but positive at the same time xx

[Ali49]

Roxanne i have found driving fine. It is my right side so no changing gear - if it was my left i think i might need longer. The seatbelt is fine - not bothering me at all upto now xx

[MHaz]

Get the results this Mon coming 🤞🤞🤞 xx

[RoxanneT]

No worries. Do you have a followup dates to get your results? 

[MHaz]

Really sorry just re-read and realised that last one was for Ali49 (as in driving) xx

❤

[MHaz]

Bless you xx

I just had the WLE.

Will definitely be careful just hard to know when to start doing things?

I'm not even thinking about driving yet as I worry over things so prob will take me quite a few weeks before I drive xx

[RoxanneT]

Ali49 - Well done, you're driving!!  how is the seatbelt?

[RoxanneT]

I cried most nights after the op, i'd wait until everyone was tucked up in bed and have sniffle in the bathroom. i thought i was coping until i saw my GP 1 week post op, she asked me how i was and i burst into tears. I guess i was holding my emotions in check i hadn't realised.

Be careful with the little bits of help around the house. i did that and now i have mild cording in my elbow, it hurts  you had a WLE did they do a sentinel node biopsy too?

take care xx

[MHaz]

Hi Roxanne, thank you for your reply 😊, sounds similar to what I did today, I went out for a lot longer as felt I could and even though I sat for quite a bit too I walked a little quicker!

I then showered as I now can for the first day too and think I'm just really tired.

Also trying to do little bits around the house as feel bad I can't help!

Think I'll just totally chill tomorrow and have a little slow walk out 😊.

Hope your recovery is going really well xx

[RoxanneT]

Hi, i felt the same too shortly after my op. Have you been out yet?  Fresh air sometimes helps but listen to your body and don't do too much.  I remember feeling really up one day instead of going out for 10 mins i went out for  an hour, that evening i was in so much pain and discomfort i couldn't stop crying.

Remember you have every right to feel down, is there anyway you can get some "me time" or somewhere  quiet in the house? 

[MHaz]

Having a very up and down day today 😔.

Just had a shower and it felt a bit strange so got all upset!

One minute I feel really positive, then the next feel not so!

Finding it hard as trying so hard to not worry my family 😔 xx