Newly diagnosed with DCIS
Newly diagnosed with DCIS newly diagnosed with DCIS don’t know what to do
Hi all
I have moved this post by new user June so it will be better seen.
Moderator
Breast Cancer Care
posted on 5.10.06 4:18 pm
agila
I have recently been diagnosed with high grade DCIS, booked in for lumpectomy on Tuesday next week don’t know wether I am doing the wright thing by not just having a mastectomy now and be done with it.
The more info I read the more confused I become,what are the chances it has already spread feeling very fragile mentally at the moment , need some advice from someone who has experienced same dilema.
Thanks
june
Hi June,
I too had the same diagnosis as you on 11th May this year, I underwent WLE and then a follow up with 5 weeks radiotherapy as it was high grade.
Mine was pure DCIS, no invasion - I was so thankful. I am 46, so hadn’t had a mammogram for 8 years, so was so panicy that it could have become invasive in all that time. It wasn’t, so hold on in there and keep everything you have got crossed.
I too wondered about which form of treatment, but my surgeon said that to go straight ahead with a mastectomy in my case could be like cracking a nut with a sledge hammer- I just took his advise. Only time will tell, but he knows far more than me, so i took his advise.
Good luck with the op - it is nothing to the mental torchure you are going through and remember you are not alone, there are many others out there going through the same thing.
Love GeorgiegirlXX
Try not to worry Hi June
It is all very traumatic - but I am sure you are in good hands, and they are doing the best to ensure you do not develop invasive cancer. After my first WLE, they didn’t clear the margins and I was recommended for a mastectomy. I opted to have a second WLE to see if they could clear the margins as I couldn’t make that decision. If it doesn’t the decision is taken out of my hands. results next Wednesday!!
It is very worrying, not knowing what happens next - but there is a good chance that they will clear the magins for you too - take one step at a time & remember that you are not alone.
FelicitymXXX
thanks for replying It is nice to hear from someone who only had to have one op and some radiotherpay and you you have not had to have any further treatment ,have read so many stories of women having to have so much more treament that your message has given me a lot of hope that this will be the same for me,just wish I dint’t feel so mentally fragile.
Good luck for the future
june
Thanks for replying Hi felicity
Firstly good luck for next wednesday ,I feel at the moment I am on the biggest rollercoaster ride in the world and can’t get off to say I am terrified is an understatement . I am very concerned that your senario will be mine because I had to see the pre op surgical team yesterday,who have warned me because I have a high grade DCIS there is a strong possiblity that I will face further surgery and from reading some of the messages on here this seems to happen to a lot of women with high grade DCIS, I was offered a mastetomy but have chosen to have a WLE which I am having done on tuesday ,but I am now wondering whether I have made the wrong decision, can I ask you why you turned down a mastectomy you don’t have to answer that one if you don’t want to I know I chose to have a WLE because of pure fear
June
Hi June,
I was diagnosed with DCIS in March this year and had a lumpectomy and gland clearence a few weeks later.
However like Felicity my margins weren’t clear and was offered a mastectomy. At that time I was horrified that things had to go so far to get rid of the cancer, so I opted for a further removal but that also had unclear margins. By then I knew I had no option than to have the mastectomy to get rid of the cancer for good, but I had to try the secong op first.
I had my mastectomy with reconstruction at the same time in July and for me it was the best thing I did and looking back wish I had gone in for it sooner. We all have choices in life and you make the right choice for yourself at the right time. You will know what that is for you.
I’m now having chemo, then radiotherapy followed by herceptin for a year, so for me this long battle is nearly at an end and I’ve got through it even though the mental scars will be with me forever.
I’m sure you will find the inner strength to get through.
Good luck!!!
Shell.
Hi June,
It is not an easy decision to make - probably the hardest one of your life, and it has to your choice. But listen carefully to your surgeon - he goes through this many times every week - he knows from experience what he is talking about.
I will always be wondering if i made the right decision - only time will tell.
The phsical pain of the op is absolutely nothing to the worry of it all, but hold on in there and good luck to you.
and remember - mine was high grade and they did get it all first time - best of luck.
Love GeorgiegirlXX
choices choices Hi June
Like you it was the overwelming fear of, what feels like, a drastic & serious op. I felt that I needed to give it a go to get clear margins. While waiting for all this I have had time to come to terms with the possibility of a masectomy & also to make a decision about not having reconstruction - which is just too much for me right now. That can come later if necessary.
So really for me it has been a process, taking on each stage and worrying about it & the consequences. It all goes with late night terrors, worry & also getting some good support from mates & this forum, which has been invaluable. The good thing is that on this forum you also get all the positive feedback of women who have come though the whole thing & survived mentally & emotionally.
Be good to yourself - I have just told work I’m not coming back until my treatment is over & I’m back on my feet 100%. Try to think about you!!! (hard sometimes!!!) & get what ever support you need.
Good luck on Tuesday. I healed really quickly after my first WLE & was back on my feet in days - so think positive!
Take lots of care
Felicity
Why chemo Hi shell
Can you please tell me why you went on to have chemo & drug treatment - like you I have high grade DCIS & if (waiting waiting!!) I have a masectomy I will have to have some lymph nodes taken out. What did they find ?
It’s good to hear such positive feedback about reconstruction - it all seems very scary - scarier than the loosing of my breast!!
Felicity
small manageable chunks my surgeon and i were trying to set a record for the World’s Most Gradual Mastectomy…i had 4 WLE’s for DCIS, then mastectomy and reconstruction four weeks ago. but in spite of all that roller-coaster in-and-out-of-hospital scenario over the summer, i still don’t regret it. i was devastated by the diagnosis of breast cancer (who isn’t?), but i couldn’t make myself accept a mastectomy until i knew that we had tried everything else and there really was no alternative. it helped me a lot to feel that my surgeon wanted to save the breast as much as i did and was prepared to do all the WLE’s rather than pressure me to something i wasn’t ready for…and because i’d spent so much time in the ward, i knew the staff quite well by the time i went in for the big operation and felt quite at home there. doesn’t mean i didn’t cry bitterly while sitting on the trolley waiting to go into theatre…doesn’t mean i didn’t find the pain difficult to cope with after the op, or look at the new boob, great job though it is, and feel sad that it’s different and my body is taking a while to recover from the battering it’s had…but i still feel grateful that i was given the time i needed to go through the process…
Hi Felicity. Hi Felicity,
You asked why I needed chemo after my operations. It’s because they did a hep2 blood test on the tumor that was removed during the first op and that was found to be positive. This means that the cancer may return anywhere in my body so the treatment I’m having now is for back up to prevent it’s return, but not gaurenteed.
My lymph nodes where removed during that first op and that’s the only piece of good news I got that the cancer had not spread to them and all the cancer was removed during the mastectomy.
I had my 4th chemo yesterday and my doctor has said I can stop at four as I’ve been feeling ill after each cycle. Funny but this time I’m feeling quite well, must be the thought of not having to go through it again.
Good luck for what ever you decide to do.
Michelle.
Just about my WLE Hi Felicity
Just to let you know I survived my op which I had 2 weeks ago tomorrow, but had a rare complication I had a arterial bleed which required a second trip to theatre and a big blood tranfusion feeling like I have been dragged through an edge backwards and have no energy. Back to the hospital for biopsy results tomorrow keep your fingers crossed for me .
Hope your are not feeling to bad
June XXX
Hi June Hi June
Thanks for your thoughts - I will be thinking of you & hoping that your results are good. Sorry about the complications with your op - sounded a bit like mine with a trip back to theatre. I felt really rough with the double dose of anaethetic but it’s 3 weeks later & I feel good again, even got up a mountain with my 9 year old son yesterday!
I am waiting to have a mastectomy next Tuesday (Halloween - somehow appropriate!) - after deciding not to have reconstruction. One step at a time - & I want to come to terms with what is happening to me before I jump in at the deep end.
Good luck to you
Felicityx
good luck Hi Felicity
Just to wish you good luck for next Tuesday will be thinking of you, you are quite right about the double anaethetic still feel I am up there with the fairies.
good luck
luv June
DCIS treatment Hi all,
I know what you are going through. I can remember how devastated I felt when they told me I had to have a mastectomy for DCIS - “what? - it’s not ‘proper breast cancer’ how can that be necessary?.”
I had 2 WLE followed by a mastectomy, and agree, it makes it easier to accept, that they have tried all they can to save the breast. One good thing out of that was I didn’t have to have radiotherapy, which I would have if they only did the WLE.
Let me reassure you that 18 months on, I feel good. I didn’t have reconstruction, I wear a prostheseis every day, now it’s just part of getting dressed. Though when I’m ‘slobbing about’ at home I don’t wear it.
felicity - I agree, recon was more scary than the mastectomy.
So just keep that in the back of your mind - in a few weeks/months you will get through it and feel 100% better and know you have done everything you can to get rid of the bad cells which might have caused you harm in the future.
best wishes
Anne
x
Thankyou Anne Hi
I was having a particularily bad day today worrying about what might come next - not a good idea I know, but sometimes you just can’t help it.
Your post was really positive about reconstruction & the fact that you had no further treatment. It’s really important to stay positive & great to get feedback on this forum.
You right, the most important thing is to be healthy for the future, what ever that may hold & get rid of those bad cells!!
Felicity