Hi All!

I hope everyone managed to get at least a little bit of respite from the fear and anxiety this weekend.

Vicki - how was the beach hut? Hope that fresh air did the trick for you.

Take care of yourselves xx

I took the kids to the cinema on Saturday, and then had my sons 4th birthday party on Sunday. So I've managed to keep quite well distracted!! 
 

The breast clinic just called, and they've moved my results appointment to 9:40 on Thursday, instead of 11:40. So at least I don't have to worry all morning. It will be school run, then appointment!! Praying for benign results!! Xxx

Hi Dee,

Welcome to this thread.  I'm so sorry to read that your journey has been such a long one, and that you are still non the wiser.  It just doesn't seem fair that you have been kept in limbo like this.  It must have been very difficult and you sound as if you have been very strong.  That's a big achievement in itself.  You're right, it's the waiting that's the worst.

I had my biopsy done a week after they found the calcifications.  That was because mine were graded as indeterminate which is mid way between being ok and being dodgy!  It all depends on how the calcifications look on the mammogram, shape, clustered etc.  Apparently once they are spotted the radiographer can grade how risky they are, or not, and many calcifications can be benign.  They are very common I've learned.  Anything that is indeterminate or above is always biopsied.  I wonder whether the delay with you is because your calcifications were deemed to look very low risk?  You can phone the clinic and ask how they were originally graded.   If they weren't on your last mammogram (mine weren't) then they will biopsy as they won't have an image of the calcifications to compare. 

Covid has hit waiting times but I now think that's a very weak excuse.  My clinic seems to be catching up, and whilst busy, I've never had more than 3 weeks to wait for biopsy results.  I think you deserved more prompt answers than you have had.   I had delays as I got a second opinion on my pics as they found another area of calcifications and I had to have another biopsy and surgery was cancelled.  Half term hit and before you know 3 weeks can pass!  Despite those delays my consultant told me we were still within the guidelines of 12 weeks which is the acceptable timescale at our trust to diagnose and treat breast cancer.  It seems to me that your wait of 5 months is a stretch too far. 

I wish you well and hope you get some good news when you finally get your results.  There is every chance you will.

Take care.  Mary

So on Friday I had my pre surgery PCR and it's come back positive. No surgery for me tomorrow now and seems I have to wait up to 7 weeks now, as that's the guidance:( I tested positive at home 3 weeks ago and have since had negative LFT so it just goes to show how results can vary. 
I now have to wait around knowing there's still cancer cells in my right breast as they didn't get it all. Also as I'm now 7 weeks post lumpectomy and 6 weeks post haematoma evacuation, things are starting to heal a bit more but they're going to have to open it all up again:(  All this of course delays radiotherapy and psychologically it's awful. Are those cancer cells in that tissue going to grow or spread? So much disruption to plans and work etc too

Hope everyone is doing ok and don't like to moan but it's got me down x

Hi GT63

i am so sorry to hear your news. I am amazed that a PCR result would show up positive after 3 weeks. I really feel for you.

I had my PCR yesterday as an supposed to have surgery on Wednesday- a week overdue as my surgeon had covid. But I have what feels like a cold so think I probably have covid - despite not going anywhere. 
 
Have you spoken to your BCN and asked about what might happen to the cancer cells in the meantime? 

Sending hugs and strength.

x

Hi Dee, 

So sorry that you find yourself here and that's its been such a long and stressful journey and you still have no clarity.  I'm glad that you found this thread to be of help and please know you are not alone. 

Any news on your biopsy results?

Please keep us posted. You are one of the girls now!!

Sending best wishes xx

Hi GT63, 

So so sorry that this has happened to you and now you face another agonising wait. Have you had any confirmation about the seven weeks?

I have read this too but was not sure whether it was only the case for elective surgery. I feel that removing cancer is definitely necessary rather than elective but am sure your team will do best by you and balance any risks and hopefully reassure you.

I gather PCR's are a whole lot more sensitive than lateral flows and you can test positive for much longer than you would on a lateral flow. Either way it's absolutely s*** and I really feel for you. It's no surprise that this has got you down so please don't apologise for moaning!

Sending hugs xx

Hi Bubblesmum, 

Keeping everything crossed that your PCR is negative and your surgery can go ahead on Wednesday. The waiting and delays really take their toll. Hang in there! 

Lots of love xx

Hi,

I hope you don't mind be jumping in.

I have just been diagnosed with high grade ductal carcinoma in situ plus invasive ductal carcinoma 'at least grade 2' with lymphvascular invasion.

I'm only 36yo, single mum, with a 3 yo daughter and no family around as I was not born in the UK although have been living and working here since 2012.

I am quite scared and not sure what to expect. I have a phone call app on Thursday where I will find out a bit more hopefully on the treatment plan and if additional tests are required.

I feel lost and keep thinking about my little girl and what will be of her if anything were to happen to me... My thoughts are running 200mph.

Sorry for all the negativity, just looking for some support.

Hi GT63

I really feel for you.  I'm so sorry about this.  My understanding of this PCR testing is that it's a bit hit and miss.  When my son had Covid at uni he was told to not take any more PCR tests after he recovered for 3 months as it would almost certainly come back as a false positive.    This is because the dead virus' DNA is still picked up in a PCR but it's not active and you're not contagious.  This is the science apparently, so to have a cancer operation cancelled under these circumstances is very tough on you.  As you tested positive at home a while ago, you will surely have recovered by now.

I hope you get a date soon for your surgery.  My surgeon told me that a small delay wil have no affect on outcomes, but I know, understandably you will worry anyway.  
 

M x

Thank you Mary and everyone else who has replied. 
 

Had a very low day on Monday which should've been the day of surgery. I was really concerned about my mental health as I was all over the place, not helped by my job which demands emotional labour too - I'm a support worker in social care with 1:1 clients. It's exhausting when you're giving out so much but need support yourself. I've taken a few days off to adjust to this recent challenge to my treatment and try get some perspective. Monday I was like - right that's it! I can't work anymore it's too much!!

Family try but they really just don't get it, they don't get how or why I feel as I do at certain times - I just get all the positivity talk and how strong I am. At the same time I feel for them, as they love me and are having to deal with what's happening to me too.  
 

So currently feel in limbo, waiting to hear what the plan is for my continued treatment and yes, very concerned about the delay and that PCRs are not reliable! I could test positive for ages. 
 

Sending out hugs to all in this rubbish club xxx

Hi NessiJessi,

Welcome to this thread where you can be sure to get some support from everyone sharing their journeys.  I know I have from when I first started the thread  at the beginning of my own journey.

Im sorry to hear about your situation, and how worried you are about yourself and your daughter.  Do ask for and accept all the help you can at the moment.  Does your little daughter attend nursery/pre-school.  I'm sure other Mum's would be very willing to help pick her up and mind her for you whilst you attend appointments.  My children are much older but I have had a lot of support from their friends parents.  I know we dont like to ask for or accept help, but people really are very kind and will be happy to help you I'm sure.   

In these worrying times when we get results and a few knock backs, it's easy to over think everything and expect the worst.  I have done that many times!  Try not to jump ahead and take every stage as it comes, advice I have found to be very useful!  You will then look back and wonder how you got through it, but you will.    In a way the awful and worst part is all the waiting for tests and results.   You've got through that already so pat yourself in the back!  You can now press on with your treatment plan in the knowledge that you will be very well looked after.    Do keep in regular contact with your allocated nurse too at the clinic.  They are very good at getting back with queries and reassurance.

I'll be joining you on the way as I get my post op pathology results this afternoon!

Take care.  Everyone on here is wonderful and will be happy to help any time you need it.

Mary x

Hi NessiJessi,

Welcome to this thread where you can be sure to get some support from everyone sharing their journeys.  I know I have from when I first started the thread  at the beginning of my own journey.

Im sorry to hear about your situation, and how worried you are about yourself and your daughter.  Do ask for and accept all the help you can at the moment.  Does your little daughter attend nursery/pre-school.  I'm sure other Mum's would be very willing to help pick her up and mind her for you whilst you attend appointments.  My children are much older but I have had a lot of support from their friends parents.  I know we dont like to ask for or accept help, but people really are very kind and will be happy to help you I'm sure.   

In these worrying times when we get results and a few knock backs, it's easy to over think everything and expect the worst.  I have done that many times!  Try not to jump ahead and take every stage as it comes, advice I have found to be very useful!  You will then look back and wonder how you got through it, but you will.    In a way the awful and worst part is all the waiting for tests and results.   You've got through that already so pat yourself in the back!  You can now press on with your treatment plan in the knowledge that you will be very well looked after.    Do keep in regular contact with your allocated nurse too at the clinic.  They are very good at getting back with queries and reassurance.

I'll be joining you on the way as I get my post op pathology results this afternoon!

Take care.  Everyone on here is wonderful and will be happy to help any time you need it.

Mary x