DCIS

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1

Hello I may be over posting at the moment, my mind is turning cartwheels over all the info I have gleaned over the past 5 days.

As a recall after mammogram, I understand I may have a few test to undergo.
The results I imagine will be fine.(fx)
I have been thinking about what may happen, and have read about a lot of conditions that I may/may not have ( probably shouldn’t have, but the internet is so available).

DCIS is a condition I had never previously heard of, but may seem to account for a number of people diagnosed through screening.

I am just a little bit alarmed at what I believe to be a large proportion of people having mastectomies through diagnosis of DCIS.

Is this something I should be thinking about before I go to my recall appointment? If they diagnose something like this do you have to make decisions very quickly, or is it about returning for further consultations?

My breast clinic appear to be advertising a one stop shop - hoping that means I can go in , have a few tests and leave again, very happily, although I imagine there will be some issues along the way :frowning:

BTW Feeling very old today, my son is 21, he’s at uni and coming home for the weekend. I haven’t said anything to my children yet, should I have? My OH thinks we should wait till we have something to say, I don’t like being dishonest, and know I have been horribly grumpy this week, which I wouldn’t normally have been.

Sorry, feeling very down again :frowning:

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Hi lilly7,

I’m sorry I don’t really know too much about DCIS but thought I would pop in and say that waiting is the worst time, your brain goes into meltdown, everything is scary and frightening. This forum is great at helping allay these fears and there will be someone along soon with more information for you, so the very best of luck for your appointment, take care xx

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Hi Lilly

Sorry you have found yourself here. I know how worried you are; last year I had the dreaded recall following my first mammo.

Anyway I did have DCIS; but here is my “story” to hopefully put your mind a little easier.

Remember 9 out of 10 recalls are shown to be no cause for concern.

I attended the one-stop shop & had what was an enhanced mammo where they specifically look at the area they need to. This was then followed by an ultra-sound & a very good breast exam. Once that has been done I then had a chat with the Dr Radiologist.

My mammo confirmed a small area of micro calcifications known to possibly be DCIS but could also be begnin. Nothing showed on the other tests. It was recommended I had a bi-opsy & this was explained in full to me. (Take someone with you as I went into frefall at this point & a second person would have been reassuring).

Went back 2 days later for bi-opsy at bit bruised but didn’t need any time off work except fpor appointment. Hubby came with me on this & did the driving; but if I needed I could have myself.

Then the worst bit a 2 week wait for results. Turned out to be “inconclusive” from the samples taken & then referred to surgeon as they recommended an Op to remove area. I was fully informed that could still be begnin & I would be left with a scar. Between this & appt with surgeon I weighed up pros & cons & decided I needed this area removed even if it proved to be begnin at least I would know.

Op went well; recovered & back at work the following week. Another week & went for results it was DCIS (earliest form of BC) non-invasive; no danger of it spreading anywhere else. Mine was low/intermediate grade. Unfortunatley I didn’t have clear margins on 2 sides & needed another Op. Off 2 weeks this time as a little more bruised but still OK.

Once results of this known I had good clear margins as far as they can say they thought they “had it all”. Due to my age/family history & intermediate grade they recommend radiotherapy which I also opted for to reduce possibility of it coming back.

Active treatment all done; onto monitoring I still get some low days this is perfectly normal as it is quite an emotional roller coaster.

PLEASE PLEASE don’t goggle until you have been to the clinic & you know more about what is going on (hopefully nothing). I don’t know if your mammo was the first one you had as they don’t know what is normal to you & sometimes the mammo taken is just not clear enough. They always ere on side of caution.

DCIS is more common nowadays as it has been picked up on screening more.

Lots of hugs; be kind to yourself & let us know how you get on. If you need a bi-opsy there is a lot of support. Once result of my bi-opsy was known I was introduced to my Breast Care Nurse & she has been very supportive all the way through & when treatment finished.

Sorry for the lenght of this post I tend to write novels on here; hope it helps.

Oh take a notebook & before clinic write concerns down & what is said so you can refer to it later; you don’t always take things in. Well I don’t anyway!

Lynne

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hi lilly7-i was recalled and after a biopsy and scan was diagnosed with high grade dcis-i had a lumpectomy-they call it wle-i didn’t lose my breast as i have big breasts -it really depends on the size of the area found as to whether mx is recommended-try not to google-it’s best to hear what they say-panic sets in and your mind works overtime whilst waiting-it’s fab it’s a one stop shop-x

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Oops Take 2

Sorry my ops were local exicions (WLE) Masectomy not considered for me as only in 1 area & boobs an “ample” size being a D cup.

Cosmetic result pretty good & scar already fading; in some places unless you look very close you can only just make out a very thin white line.

Take care
Lynne

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thank you so much for replying and your words of encouragement, jatytc, Simples and ethyldysl. I know that I am jumping the gun, and worrying about things that have not happened yet, it is a terrifying thing to go through. Reading through this forum is a great help, and seeing all the positives in amongst the gloom is really helpful.
My hubby is coming with me tomorrow, thankfully, so if I get any results he will be there to help and to think of anything I need to ask. I will take a notebook with me, and make sure I know exactly what’s going on, if anything.

I will definitely not google any more, and wait for info from the clinic.

Thank you once again for your support, sending big hugs to you all too.
Thanks
Lilly

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how are you doing lilly7 ?/ x

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Thanks for asking, ethyldsyl…I had my check on Friday, and apparently am clear…it was cysts. I was so worried,but for nothing, thankfully. I am so grateful, as I was very worried, and have been so humbled by reading the posts on this website. I hope that you are doing well.

Take care,
Lilly x

9

Hi there,
I totally empathise with how you’re feeling. I started in the same route after a routine mamm in august. I wanted to believe nothing to worry about but couldn’t help doing so. I attended the recall clinic where I was shown the pictures and the area of concern. I was recommend to have a core biopsy there and then- oh I was so scared and distressed. They were really sensitive to me and explained everything. The bruise wasn’t too bad afterwards, only one area was tested.

Waiting for a week was very hard indeed but i used the time to look at the options and possibilities. I dreaded having to make a decision between a lumpectomy with rads afterwards, or a mastectomy. As it happened my DCIS was too extensive and high grade so the multi disciplinary team proposed a mastectomy so I didn’t have to choose. I do think this is the right decision for me because it gives the best prognosis and if I hadn’t taken this advice I would always have worried about it.

The surgeon immediately started booking all sorts of tests to make sure the bc hadn’t morphed into invasive anywhere else. I found this very distressing because I’d walked in without any known problem and now everything was up in the air. Oh I was hard to live with initially, I had to come to terms with so much and it’s obviously normal to feel scared and threatened. I don’t think we should feel bad if we need to let it all hang out while we come to terms with all the potential changes. I’m sure it helped me to come to terms with things.

I’ve never had anything wrong with me before so it’s all been a big shock and I dreaded all the tests tho in truth they weren’t too bad in the event. Waiting for test results is nerve wracking and if you can plan any distractions they might help! I was so scared of treatment, needles etc so I asked if there was any help and was referred very quickly to a psychologist…this is really helpful if you get the chance.

So I’ve seen each test as a mini mountain to get over and the end has got closer…I’ve now had a preliminary op-a sentinel lymph node biopsy which I guess has been a trial run for me…it wasn’t too bad an experience really. Luckily all tests have been clear, so now I’ve had a full MOT and only have to have the mastectomy / recon and no further treatment. This has been the best possible outcome I could hope for, right from the initial diagnosis. Now I’m waiting for an op date and just want to get out the other side.

If I can help in any way, do pm me…

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Oh dear, nonsuch…I feel like such a fraud now. I was really panicking and reading so much information and diagnoses etc on the internet. It transpired to be cysts,and no treatment was needed.
I hope everything turns out well for you, I’m sue it will, and thank you so much for your post, it will no doubt be a font of hope for others in similar positions.

Glad to hear your nodes were clear etc, and fingers crossed your worries are over.

Good luck,

Lilly x

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Hi Lilly7, I hope you feel better following your appointment. My surgeon explained to me that it is easier for him to give a patient a definitive answer one way or the other than to have patients wait in the nightmare of the tests / results time tunnel. I know it did my head in. I was fine between initial calcification id, stereotatic biopsy & WLE cause even though biopsy had returned a B4 poss invasive malignant, I was so firmly in denial I didn’t register it. As it happens I had DCIS on two sites and a small tumour in one of the two and WLE removed both sites.
The worst bit was having to return for Sentinel Node Biopsy & wait for results which thankfully were clear.
I’m now on week 4 of 5 of rads - bit sore by now and not too enamoured by the side effects of Tamoxifen. However all things considered, even tho I did have invasive ductal cancer as well as DCIS, my prognosis is excellent…unless of course i continue to be cranky & moany and then my other half may just bump me off:0)
The uncertainty is the worst part in my experience - once you know the dx, then whatever it is at least you have a plan and we all like to feel as if we have regained a little control in this uncontrolled shocking time.

Love and strength

PCB xx