Hi Mary,

I expect that your diagnosis has come as quite a shock? It does to all of us, but is that much worse when you were expecting a benign diagnosis. You are fortunate that this has been found early and that you are having. Strangely, when our backs are up against the wall like this, we seem to find the strength to cope with everything.

Breast cancer is one of the most treatable types of cancer nowadays. You will find that your surgery is very straightforward. Please let us know how you get on and remember, that we are always here for you.

Kind regards,

Jolamine xx

Thanks Jolamine,

it is a shock.  It's a tiny area but overall the calcifications are almost 2cm. I asked the Dr how can I be sure that this was the only area of IDC.  She said no more had been seen by the pathologist but that we can't know for certain until the lumpectomy is done.  I'm so scared that once further tests are done they will find more.  Don't you think it's odd that no DCIS was found and only this 1mm area of IDC?

She said the sample was so small that they hadn't been able to do the hormone receptor tests (well the progesterone and HER test) but they had ascertained that it was oestrogen positive.  They will test again after the lumpectomy.  She said there may be a good chance that this one area was out already when they did the biopsy as it's so small but they need to check.  I'm having some lymph nodes removed too but I think that's standard for IDC.

Still getting my head around what all this means.  Really scared about them finding more after the lumpectomy. 
Thanks for replying x

Hi Mary,

The two types are often found together. Did you ask your consultant whether or not there was any DCIS, as well as the !DC? I understand that "if both types are found together, only the details of the invasive breast cancer will be used by your spialist team to look at treatment and prognosis (Breast Cancer Care - Understanding your pathology results).

Imaging is usually pretty accurate these days, but some cancers don't always show up on imaging and, if this is the case, your surgeon will find them when performing your lumpectomy - any tissue removed will be sent to pathology to make sure that a clear margin has been achieved around the tumour. If there are any further calcifications, these would be found at the time of your op, but your previous pathology results should have picked up whether your cancer is localised(only in one area) or multi focal (more than 1 area).

It is good news that the sample may already have removed the cancer and that it is oestrogen positive. I was in a similar position to you 12 years ago and had a second bout a year later. I had a lumpectomy first time followed by Tamoxifen for 1 year. Second time I had a double mastecto, fed by Letrozole for 6½ years. I am still living a busy and fulfilling life, so please try not to panic.

Kind regards,

Jolamine xx

Hi Jolamine,

Thanks, thats Helpful.  Yes I did ask the consultant and when she said this tiny 1mm had been found and I asked her what was in the remaining 16mm of calcifications she said just calcification!  DCIS was not mentioned and I asked her.  She said the area of IDC was so tiny she was full of praise for the pathologist who picked it up!!  Well yes!!  I've asked my nurse since and she's been a bit non comittal, just that nothing has been missed and to focus on that.

it worries me that you had another bout after a lumpectomy only a year later.  I've always thought that if I ever got this I wouldn't hesitate to have a full mastectomy.   I've never had much of a bust anyway and I just want it out!!  Consultant said absolutely not as it's major surgery and not needed.  I'm wondering whether to get a second opinion actually. x

Morning [@marywj]‍ 

Sorry to hear that you are having this worry, I had a mammogram back in 2018 - I had a cyst that they were going to pop for me, and at the time found a lump by the cyst which turned out to be a fibroadenoma, two years on aug 2020, I had another mammogram as I was still having issues in my right breast, at the time the consultant was unable to feel anything in either breast and I had my mammogram, on the mammogram something was found and the consultant asked the nurse to repeat it, the nurse showed me the scan, of my previous and the one she had just done to show me why it needed repeating. So my IDC was an incidental finding in my left breast, the consultant had not felt it. I was only told Invasive, after my surgery they said they had removed DCIS also, which was news to me and the first I heard of it... so in all my appointments DCIS was never mentioned, it was only in the letter they sent to me explaining to me and my doctor of their findings and results of lymph nodes etc that DCIS was ever mentioned. So I can completely understand your worry, but during surgery they will look and remove anything they find that they do not want to leave there. 

AT the beginning of this rollercoaster ride, that you feel you will never get off, there are so many things running through your mind, so many worries that you just don't seem to be able to shake, it is natural to have this fear of what if they miss something, what if a delay can make things worse. Once you are with the team though they are very helpful, and you should have been given a number for your breast team nurse that you can talk to, and after surgery and tablets and radiotherapy they will see you continually I believe is supposed to be annually to keep an eye on any changes to catch things early. your doctos surgery will also be told and a nurse from your surgery will also be in touch to help you if you need it. 

Good Luck 

Thanks for replying Kay-D,

It sounds as if your experience was very similar to mine.  I've been plagued by cysts since my first mammogram at 50.  I felt another one on the left and wasn't concerned but they then find these calcifications on the right which started this whole process off.  I feel like those cysts have been a blessing as I wasn't due a screening mammogram for another year.

According to my consultant the only thing found was this IDC grade 1 which is tiny at 1mm.  I'm still scratching my head as to why no DCIS was found or mentioned.  If it was cancer I was hoping for that but the fact ive got a small invasive has terrified me.  
There's no way to know for sure then until surgery in 2 weeks time, then at least another 2 weeks for results.  It feels like a mountain to climb and just more weeks of worry and uncertainty.  Perhaps the surgeon can reassure me a bit more after the surgery, I hope so?

I'm not good with health issues and I'm not particularly brave.  Plus menopause has caused anxiety off the scale so all in all I'm a bit of a mess.  I've got my nurse contact number and I have spoken to her but she's on holiday this week.  She's very cheerful and upbeat but that's standard response I suppose.  The only thing she's told me to do was to eat a high protein diet as it helps with healing after surgery.  That's pretty much it.

It helps a lot reading about you ladies and how you coped.

All the best to you going forward x

Hi Mary,

I have since learnt you can have IDC on it's own ith no DCIS, or have DCIS and IDC found. But like you mine was not noticed until surgery. 

I was in my 40's when I had my first mammogram, I'm 47 now, I think! Sorry I know that comment sounds weird.. So I would have been 45 when they found cancer, so 43 when I had my first mammogram. So I wasn't due to be having mammograms at that point, and I was grateful for to the cyst, for findind the fibroadenoma, and I did have symptoms of Cancer, but I had ignored them and put it down to maybe being peri-menopausal, it was only after that things clicked into place and I thought OK that explains all of that!! and because I had that first mammogram they were able to compare it. I haven't got to the menopause stage yet, so something else to look forward too!

I was the same, when I knew they had found something, I thought oh it's going to be DCIS, and got used to that and looking into it and finding out what I could, so when I got the call, I was waiting to hear, we have found DCIS, so when he said Invasive, it was a bit of a shock and my first thought was I didn't research that!! But I was really calm, and I remember my nurse keep asking me are you alright, as I don't think I was acting in a way they were expecting.... but we all act differently, I had gone there on my own, and had to phone my daughter when I got home and let her know, and that was actually the worse part for me.. 

Eating lots of protien is a new one on me, I didn't get told that, or if I did I've forgotten. Everyone recovers at different rates after the surgery, so don't measure yourself to anyone else, I made that mistake and it made me feel very low. Take your time and only do what you know you can safely manage.

You can message me any time if you want to chat.

Oh Kay-D that must have been so hard going to that appointment on your own.  That's when I get angry with myself for being such a wimp as others are so much braver and stronger.  I suppose I haven't coped so well because my husband had cancer 4 years ago (prostate) and is fully cured so we have already had a lot of worry which hasn't helped me.  
I was wondering if you had any MRI scans pre surgery as I've read that a lot of ladies do but this hasn't been mentioned for me.  I'm just having surgery???  I'm scared of it, but I wouldn't mind having one actually but it doesn't seem to be in my treatment plan.  I wonder why not??

Thanks again for your kind words and wisdom xxxx

Funnily enough Mary, I was glad to go on my own, otherwise I would have been more worried about the person who was in there with me would have been feeling! 

My Nan passed away from Lung Cancer and I found her cancer diagnosis harder to deal with than my own. But you haven't had time to process it all yet so it is all too raw for you and your emotions, fears and worries need to even out, your not a wimp and you'll find that out as you go on this journey, you will suddenly be amazed at how you cope.

I didn't have an MRI. So I can't tell you in what circumstances they do this. 

You will soon find, I hope.. that the way you felt when your husband was going through cancer is going to be different to how you feel about yourself going through it. But please give yourself the time to process it. I was put in touch with a women who had the same diagnosis as me and got to speak to her on the phone and she helped me to get my head around some of it, but it also made me feel low as previously mentioned as she said a week after surgery she was up and about and carrying shopping and was completely back to normal, where as I was having to stay at a friends house for 3 weeks to be helped... so just because the diagnosis and age range was the same, the level of recovery and treatment based on where she lived to where I lived and my recovery was completely different, so you just have to look at your journey and take it at your pace, and know that everyone is going to get through this completely differently.

Hi Mary,

Sometimes they are a little non-committal until after surgery, when they'll know more. Don't let my second bout worry you. We are all very individual in our journeys. I was post-menopausal when diagnosed and was given Tamoxifen, which didn't work for me. There were also procedural delays in arranging radiotherapy, so in the end I never had any. I may be wrong, but I suspect this may have  accounted for my second bout.

Surgeons are very reluctant to do a mastectomy unless absolutely necessary. They are also not keen to do a double mastectomy, unless both breasts are affected, as they say that the outcome is no better by doing this.You are certainly entitled to a second opinion, but I suspect that you would get the same answers.

I am so glad that Kay-D has joined us. It is always so helpful to be able to talk to someone with experience of your particular type of cancer. Not everyone gets an MRI. Your cancer must be clearly seen on mammogram and therefore may not need to incur the additional cost of a n MRI.

Kind regards,

Jolamine xx