DCIS

nicolasa

Hi there,

I'm 39 and a mummy of a 10 month old girl, I was diagnosed with DCIS when going for a mammogram for a cyst that turned out to be nothing but fluid.
I just had a lumpectomy for a small area of 1 cm or so... I'm having actual difficulty to get a report about what exactly I had so till then I cannot be more accurate but they took out clear margins too...
Anyway... I'm more concern about having to have radiotherapy in my whole breast which is the right and i don't have to worry about my heart but I do about my lungs coz I was a terrible smoker for too many years!!!
I was told by the surgeon oncologist that if she knew there was a possibility of me saying no to the radio she would have performed a mastectomy instead! She basically said is the standard of care and don't even think about it or ask questions... I felt like a little lamb...
There is good few articles about the side effects of radiotherapy being the most important one the possibility of creating cancer stem cells and the cancer coming back with a vengeance!

http://www.sciencenewsline.com/articles/2012021402300033.html

Also some doctors don't always recommend radio after lumpectomy as DCIS is supposed to be cancer stage 0....

Any thoughts, advice or experience in the matter would be greatly appreciatted.

helstar

Hi Nicolasa,

I have just had surgery to remove dcis last week also. I have previously had breast cancer two years ago and had chemotherapy and radiotherapy for it so this time the dcis was a huge relief. I had 6 weeks of radiotherapy at that time and I'm having 3 weeks of it this time to ensure that all potential cancer cells are destroyed.

My experiences with radiotherapy were extremely positive. I attended Dr. Salib in the Hermitage Clinic near Lucan and the whole Radiotherapy team there are fantastic. I had had some really bad experiences with the Breast Care Team in the hospital that I was (and unfortunately still am) attending but when I moved to the radiotherapy stage of my treatment it was like a breath of fresh air.

Like you I did a lot of reading (mostly on the internet) and was really anxious about some of the information that I was getting. I think now though that it is best to try to trust the professionals as they are in the best position to advise you. There is a lot of nonsense on the internet regarding cancer and cancer treatments that is extremely misleading and unfortunately, it is when we are at our most vulnerable that we seek out some answers from these places.

My advice to you would be to meet with a Radiotherapy Oncologist to discuss all of your concerns, I would highly recommend Dr. Salib at the Hermitage Clinic, he went through everything with me before I began my treatment and was just a lovely person to deal with. The girls in the radiotherapy department there are really lovely too and going in everyday for 6 weeks was a pleasure (I was sad saying goodbye to them all).

I hope this helps a little, it is only my experience but I think the radiotherapy treatment is extremely important in preventing a possible recurrence of dcis developing into anything more serious. Please feel free to mail me if you would like any more information. H

nicolasa

Hi Helstar,

Thank you sooo much for sharing your experience, I am happy for you that this time it only was DCIS, above all after having had the whole bc before... which I have to say it's not the usual, normally you get DCIS first and then the full blown tumor... oh well... what's normal when we talk about this horrible epidemic that no one seems to know much about... even doctors... I suppose that's my main problem, I do not have that faith in the treatments available nowadays, I think I have read too many books... Just if you want to feed my curiosity I would like to know if the bc and dcis were in the same or different breasts? and did you have breast conserving surgery the first time or mastectomy? No matter what I wish you all the very best and I really hope this is your last time ever!!

helstar

Hi Nicolasa,

Thank you for your kind comments. I had the bc in my right breast and the dcis in my left. Prior to my bc diagnosis I was not being monitored but since then I have 6 monthly checks - 1 mamogram and 1 mri each year and it was through an mri that I had in May that the dcis was picked up.

After my bc diagnosis I had the genetic testing done and I have the brca1 gene mutation which means that I have an increased risk of bc and ovarian cancer and when I am 40 I will have to have my ovaries removed (I'm hoping that more research into ovarian cancer and better detection of oc will be discovered in the next 5 years to avoid this though!).

After your dcis diagnosis hopefully you will continue to be monitored so that anything will be detected early - Hopefully this will be a once off for you and having regular screening will keep your mind at ease.

I found a lump in my breast in 2010 and was referred to the breast clinic in St. James's which turned out to be bc. It was diagnosed early so thankfully I only had to have a lumpectomy on this occasion. I am considering opting for the double mastectomy in the near future because I feel like this would give me the best chance of survival.

Just to put your mind at rest, I had chemo, radio and am currently taking tamoxifen to stabilize the initial bc in my right breast and so far this has been really successful. As soon as you finish chemo, you begin to feel much better within a couple of weeks and my hair began to grow back within a month and it's thicker and nicer than it was before!

Radiotherapy can make you a little tired but it's not a big deal at all. I was able to have my radiot in the morning and then go to work afterwards and I was fine. I hope this helps. Best of luck with everything!!

nicolasa

wow, you've left me a bit speechless there... what an intense few last years you've had!

That brca gene 1 and 2 it's been a lot in the news for the last few years too... and this early screening has raised the number of cases into silly figures but i cannot make my mind regarding if it's a good thing, because I haven't seen the survival figures change much.

You seem like a very brave and intelligent woman and I know no matter what you do it will be the best thing to do. 5 years is a good time span so they can come up with new treatments and ways of decoding genes... I'm gathering your age to be around 35? do you have kids or plans for a family?

I have a 13 month old girl and I want to have another baby soon enough, if possible... My dcis came oestrogen receptive positive so they also want me to take tamoxifen for 5 years or so which it kind of goes not too well with my plan or giving my girl a sibbling so I won't for now. I don't want to sound dismissive at all but I just don't think it's the right time for me in my case, if something else happens in the future I will go through all I have to, but this stage 0 is more like a wake up call for me and I don't want it to interfere in my life.

Also, I don't know what's your approach regarding looking after yourself that I'm sure you do, but I just wanted to say that when I asked every doctor what could I do apart from treatments to help avoid any recurrence they all said, that there's nothing really and that a normal healthy lifestyle should suffice.

Thing is that I cannot agree with this, that I believe that what you put in your body will determine in large proportion what diseases or unbalances your body will have to fight, the Hippocrates premise "you are what you eat" turns out to be true and the lack of awareness and control we have about what we eat doesn't really help.

So I just wanted to suggest that if you haven't done it yet please look into giving up dairy, because there is a lot of scientific evidence that proves a connection with breast and prostate cancer. I have given up all dairy which not much problem and I was mad about cheese! and I try to keep my animal protein intake to a very low level.

Your emails have help me indeed and you have all my respect and admiration, thank you for sharing again. All the best!