Hello Ruthieroo, 

I am sorry to hear about your diagnosis and I just wanted to welcome you to our forum.

I can imagine that being a radiographer as you say has made you all the more aware  but you've joined the right forum to talk to others who have also been diagnosed with DCIS. We have some information on our site on DCIS which you can find here. I thought I would also mention a couple of our lovely members who are familiar with this type of cancer [@Irene70]‍ and [@Jolamine]‍ and who I hope will be along to share their experience with you. I would also suggest you have a look at this thread by [@Oaktree]‍  and feel free to respond to it if you wish. 

It does help to talk to others who have faced a similar situation or treatment so I hope you will find the support you need on this forum. 

If you wanted to talk things through with our nurses, you are also welcome to give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi Ruthieroo

sorry you find yourself here. I was diagnosed with DCIS last March, post op my pathology included invasive. Mine was the size of a tennis ball. I did not need chemo but underwent radiotherapy and tamoxifen. my rads were cut short so did not receive the full dose as my oncologist felt it was doing me more harm than good - my margins were wide and as far as oncology is concerned I’m ‘cured’. I did kick up a bit of a fuss with regards to rads as I wanted everything thrown at it but at the end of the day I had to put my trust in my oncology team. They know far more than I do. 

It must still be raw for you having only being diagnosed in January, it does get better I promise. x

Hi thank  you for kind words, I've since realised I should of had a bone scan, I'm waiting to hear back from hospital tomorrow.  Radiotherapy starts Wednesday

Hi Ruthieroo

so sorry to hear of your diagnosis. I was diagnosed with DCIS last year and after lumpectomy in January and 15 sessions of radiotherapy am now cured.

the difference you have is that it has become invasive but I agree with Maggie that you have to trust your  medical team. They’re the experts and as I understand the oncotype scoring then 10 is low which means a low chance of recurrence. You’ve had your mastectomy so your cancer will be gone and from here onwards your treatment is your insurance that it stays that way.

I agree that we all tend to overthink a lot particularly when first diagnosed. I imagined every ache and pain was cancer but my BCN assured me that this was absolutely normal.

Good luck with the radiotherapy and I’m sure you’ll feel better when normality returns to your life. You will be closely monitored for at least five years after and I find that really reassuring 

sending hugs - Irene x

Good that you’re getting a bone scan, it does sound like they are being really thorough. This should hopefully give you some peace of mind. Only thing with my rads was my skin started to itch something terrible near the end of my treatment. Wish I had zerobase right at the beginning of treatment. I also take tamoxifen and get hot flushes/night sweats and joint pain but taking it is a necessary evil as I do not want  a recurrence. I found that the tamoxifen brand made a difference in side effects, so I ensure I get the same brand with every repeat prescription. 

would be interested in how you get on with counselling, it’s something I thought of doing.

do keep in touch and let us know how you’re getting on and/or you ever want to vent. I found it easier to talk to people who have actually been through it as I found those who haven’t don’t have a clue and say the most ridiculous things at times. :(

all the best for Wednesday x

Yes Ruthieroo, make sure you moisturise every day to help with the radiotherapy. My doctor prescribed Isomol Gel and I still use it today.

My breast did become itchy towards the end of rads and it felt a bit hot. This all went within a couple of weeks after treatment finished. I had no skin reaction which I believe was down to the moisturising.

i only felt a bit more tired towards the end of treatment and although my hubby came with me every day I drove the 40 mile round trip and was completely happy to do that.

wishing you well with the rads - Irene x

Well ladies I've had 3 treatments and its a myth you can feel it def hot on 3rd round. First time I was so emotional as my armpit not getting it so I'm pretty concerned whether cells are in other nodes this has not really been put to rest. My son came to se the machine he is 12. My daughter very teary and anxious for me says she dousnt want mummy to die, and won't look at my chest, which is honestly fine bless her it does look pretty scarey.

I've since read that implants after radio to chest wall may be compromised . I'm unsure of type of or if any reconstruction yet. Bridge to cross next year. Teary today I'm gonna get a "cheer up" from my husband any minute now

Oh ruthieroo, I’m sorry you’re finding it difficult. I sounds like your greatest worry  is the micrometastasis, which is understandable, unfortunately it’s not something I can help you with. Can’t you speak to your oncologist about your fears or ask the radiographers at the rads centre about it. When my oncologist stopped my rads I had the radiographers acting as my advocate.

There is another lady on here who had micrometastasis [@Cornishpastie]‍ perhaps she could help.

im glad you have a supportive family, do something nice for yourself. When I was going through my treatment I had all sorts of things done to make me feel human again; hair cut, manicure, teeth whitening, new wardrobe etc - vain, I know but I just wanted to feel feminine again and it helped take the focus away from my days of cancer.

Hi Ruthieroo,

I have only just come across your post, so my apologies for the delay in replying to you. It sounds as if you've been going through a rough patch recently - made all the worse by what you do professionally. It's all very fine tending to patients, but a totally different mater when you are the patient in question.

Your score for the Oncotype test was good and, would negate the need for chemo. I can understand that you want to throw everything at it, but in this case your consultant is correct. You are better keeping this option in case you get any recurrence/spread and need chemo later on, although I'm sincerely hoping that you don't!

I'm sorry to hear that you stopped taking Tamoxifen. It is not at all unusual to be very tearful after diagnosis, whether with or without medication. The sweats tend to go with the territory too, although some people find a chillo pillow helps a little. I am fortunate in that I have a very supportive husband, but how he put up with me in those early days, I just don't know! I cried continuously, pushed family away and, almost looked at ways to upset them further - Don't ask me why - I honestly don't know. I have since discovered that many of us find our emotions all over the place at this stage and, of course, most of us think the worst. Fortunately, this seldom turns out to be the case.

It is true that the majority of people used to die of breast cancer, but nowadays very many are living with it. It is 21 years since I lost my mum. There is just no comparison between the surgery, treatment and after care that I have received and, that which she experienced. 

A positive attitude is a big help to survival, so please assure your daughter that you have joined a band of friends who are ready to fight this with you all the way. There are many people here who have had much worse diagnoses than you, but who are not giving in to cancer.

It sounds as if you are fortunate enough to have a supportive hubby too. It makes such a difference when you have someone who you can confide in and look to for support.

I lost my mum to secondary breast cancer and I have had 2 bouts of breast cancer myself in the past 9 years. The first time I had a lumpectomy followed by Tamoxifen and yes, I had the same side-effects as you. A year later I found another lump in the same breast and had a double mastectomy followed by Letrozole for 6 years. Side-effects increased with this, but I didn't have radiation or chemo, so felt that I had to perservere with my other treatments. I felt much happier after the double mastectomy, as I felt that I had done all I could to eradicate cancer from my body, although there is still the fear that it could return some day. I guess that this is something that anyone who has a cancer diagnosis has to learn to live with.

When I was on Tamoxifen, my night sweats were horrific and, I was eventually given a mild anti-depressant, which my breast care nurse had found worked for some of her other patients. It reduced the sweats a little, but hasn't done away with them completely. Some people have found that changing to a different brand of Tamoxifen helped them, so they have stuck with this. I personally didn't find that this helped me.

The joint pain increased when I changed over to Letrozole. My arms and legs were especially sore, as was my back and neck. I eventually had both knees replaced and still use a walker to ease my back. I have also experienced eyesight problems and very dry skin and dry mouth. I stopped taking Letrozole in July 2017, but am still left with a legacy of side-effects.

I understand that radiation to the chest wall may well compromise implants. I couldn't have any reconstruction, as I have had problems with anaesthetics in the past and doctors didn't want to make my operation any longer than absolutely necessary. I have also had previous non-cancer related surgery, which has compromised the donor sites. Because I have had a double mastectomy, I would need reconstruction on both sides seperately, so I just make do with a slection of prostheses. These work fairly well for me and I have even managed to get back to swimming.

There is time enough to worry about reconstruction, once you've got treatment out of the way. 

Getting some counselling should help you to accept the 'new you'. At first, we are almost in denial to ourselves about this and we can be quite angry that we have got such a diagnosis. Life will never be the same again, but we can still carry on. I know that you rile at being told to be positive. I agree that we all get inane comments at times from well-meaning family and friends, who haven't got a clue what we're going through, but you and your family will cope so much better with all of this, if you can dredge up some positivity from somewhere.

I am thinking of you and yours and, hope that you get on well with your radiotherapy. Your consultant is likely to do further tests when you have finished this course and, will proceed with chemo if there is any doubt in his/her mind that it is not completely clear.

Do please keep in contact and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Wow! That was a lot to read, and  thankyou, I will do my best, . Keep you posted. Xx