Hi tbt76

Well that is not as bad as it could be. I know what you mean about DCIS, its an odd one but the great news is you are going to be around to watch your kids grow up. Mine was high grade DCIS but post op patholgy showed invasive but even if you do have an element of invasive it will be tiny. So its good that they have picked this up early, lumpectomy and rads and then you can get on with your life. x

Thank you ladies (magpie maggie, jolamine and irene) for your replies.

I was relieved to hear the words DCIS but quite worried about it being high grade........I have woken again this morning with the anxiety feeling and that sick feeling in the pit of my stomach.  I was hoping this feeling would have stayed away until at least the ultrasound neared.

I am now panicking it has had the capability to get into my lymph nodes and to spread and so I'm not sure what would mean in terms of outlook. 

My last mammogram was 2015 (as I am too young for the screening programme) and so it could have been in there for anytime from then.  Although he did examine my armpit, he didn't really push in that far as I've had before during previous checks.

Once again, it's back to waiting,  which I know is part and parcel of any illness, it's just very hard

Thanks again x x 

Hi

Im new here and hope im not invading a conversation but people seemed to be in a similar situation to me

I went to check a cyst in my left breast and they did a mamogram and found I had microcalcifications in the right measuring 30x33mm, and went on to have a biospsy. On friday the nurse called and I was told that the results showed ADH (Atypical Ductual Hyperpalsia) and that just meant there were a few abnormal cells that they may remove, but to come in and see the consultant and when i saw the consultant today he advised they want to do a further biopsy becasue a high amount of ADH is upgraded to DCIS from the second biopsy. When i asked whats a high amount, like 80% he said no 50/50. He then went on to talk about removal, lumpectomys, masectomys etc. So i had gone in feeling fairly confident and come out on the other end of the scale and now i am an emotional mess.

Hi  

Sorry to hear what you are going through and no problem at all posting here.  Its great these sorts of chats etc exist.

When is the date of your 2nd biopsy? 

My calfifications were never classed as ADH, just DCIS- I got the biopsy results yesterday.

It is an awful time with anxiety and waiting around etc for results so I completely understand what you are going through.

Fingers crossed for you.  

I gather they may still need to remove ADH so that is possibly why they were discussing some options.

Take care and keep us posted xx

Hi

The removal would be if it’s upgraded to Dcis of which he said there is a high chance and will know more from the 2nd biopsy. I’m not sure when it is I expect in the next week or so.

It doesn’t help you can’t have anyone with you so I came out very confused.

I hope everything goes well for you too the consultant did say to me if you get rid of dcis you have a very low chance of getting bc in future like 5% so that’s a positive 

xx

We all get worried when we think of spread, not sure why they didn't do the ultrasound at the same time they did the biopsies but anyway if its just DCIS it can't spread to the lymph nodes and if there is an element of invasive cancer among the DCIS is will be really small. So I wouldn't be anticipating any spread to nodes. I was told my DCIS and invasive cancer had been there for years - it takes a long time for a tumour to grow, but that's with every tumour, its called 'lead time'.  

Try not to think of spread, you have been given your diagnosis of high grade DCIS which won't have spread to your lymph nodes, you may, like me have a small element of invasive but only about 20% of DCIS cases have an invasive element so you may be in the lucky 80% category. Regardless if you have stage 0 or stage 1, the treatment plan is the same. 

I'm glad your daughter will be screened when the time is right, that must put your mind at rest. Now all that is left is a date for surgery to get it all out so you don't have to worry about it anymore.

Hi Tbt,

I appreciate that your daughter is only 9, but this is the best time for you to get tested. Some sample tissue is removed at the time of surgery and sent to a laboratory for genetic testing. It usually takes about 2 weeks extra to get these tresults, as opposed to your pathology results.

The plus with getting these tests done at the time of surgery means that you don't have to go through further surgery at a later date to get the results of genetic assays.

These tests are not suitable for everyone, but your surgeon should discuss this with you if s/he believes that this might be of benefit to you.

I am still hoping and praying that your lymph nodes prove to be clear.

Kind regards,

Jolamine xx

Hi TBT

I was just wondered how you are getting on and where you are at with everything. I hope you have a clear head with it all and that you are in a good place.

My ADH was upgraded today to intermediate DCIS so I’m a little behind you with everything now. Same   Feeling as you scared, world turned upside down, but taking comfort in how early stage this is and how we”ll all still grow to be old wrinklier.

B x

Hi B

How r u doing? Sorry to hear of your diagnosis.

My first few wks were awful.  Not eating, sleeping  nausea, worry about my 6 and 9 yr old.  I had to take myself off the internet and stop googling. It helped and I got into a more positive headspace.

My ultrasound showed the lymph nodes looked clear so no need to touch them during lumpectomy tho pathologist could still ask for them to be tested.

So covid test 3 days ago- negative and lumpectomy today.  Sadly not to plan.  Temp ok on arrival, wire in but afterwards my temp had risen and surgeon would not operate so wire removed and home I went. Temp at home normal.

I got very anxious during the wire procedure.  I cld feel myself getting hotter and hotter and the ward was soooooo hot esp with the mask and DVT stockings.  I recall now that I had a temp the day I got my biopsy results but was never ill with it.  Think it's just my body's way when I get anxious.....esp about medical stuff but my worry is now if it will happen a 2nd time- whenever that may be.

This delay has now really floored me now and I'm quite down tonight as I'm prob looking at 4-5 wk delay now and I just want this out 

Take care and keep us posted x x