My first op didn't go to plan either as I became ill, it was another month before they could operate. Its best to be in top condition for the op so don't feel too bad. For the second time I got Diazepam from my GP and took before leaving for the hosital, everything was plain sailing after that.

Hi Tbt

Im really sorry that happened to you especially because your temperature has only gone up due to being worrried. It’s so hard having the added stress of Covid in an already horrible situation.

Ive had a few down days, googling too much and winding myself up and it doesn’t help because your mind just wanders, but generally I’m trying to keep myself positive and not to worry about the hyperthetical. I’ve started doing a little meditation from m an app called Calm,  just 10 minutes here and there and I find it really calms me if I’ve become a bit jittery or anxious.....I understand it’s not everyone’s cup of tea though. 

Im waiting for my plan but I know because I’m very flat chested that I’m very likely going to have to have a mastectomy, the consultant already previously mentioned this. I’m not sure of the timings but like you I want it out,  to move fwd.

The waiting is the worst but I tell myself there’s a really good prognosis with DCIS and a long normal life ahead and I just need to get through this and move fwd.

Keep me posted for next time for you and try not to get too anxious stay in that good headspace and stay off google.

Take care we are going to get through this xx

Hi B

Just wondered how things are with you at the moment? 

X

Hi ladies

I hope you are all well.

I have now had my op (3rd Sept) after the 1st one in Aug was cancelled due to my temperature spike.

Had follow up yesterday and it was a mixed bag.  It had spread unfortunately so was invasive- much to surgeons surprise.  They had not anticipated that though they had of course always warned me they needed the pathology back to confirm.

The positives are the spread was small- 10mm, they got everything out so no cancer or calcifications left and it is hormone receptive which surgeon said were all good.

Unfortunately as it had spread, he now wants lymph nodes to check there is no cancer in them so I'm booked in for a weeks time.  I had an ultrasound 2 months ago which showed lymph nodes were clear hence why they didnt take them during the lumpectomy and he said its probably unlikely it's in my lymph nodes but he needs to rule it out to crack on with a treatment plan.

I got myself into a really good place after my biopsy results but now feel like I am back to the period between biopsy and waiting for those results.  Nauseous, low appetite, worrying, trying not to spend my entire day on Google.  I feel like the wind has been knocked right out of me again and am convinced I'm going to be told it's in my lymph nodes and that's it's a bad prognosis. 

My hubby keeps saying it's a good sign the ultrasound was clear 2 months ago but with high grade, how much can it do/spread in 2 months?  Its upper inner quadrant (my cleavage)- cld that be an easier route for it to get in to the nodes????  I'm 44 so no menopause for me yet and so I still have plenty of hormones racing about feeding this.  I just wish they had taken the lymph nodes after all during my lumpectomy especially with the continued threat of local lockdowns etc.

I know no one knows the answers and all this is speculation, we wont know anything until the results come through.  Just felt I knew what I was dealing with and now feel like it's all up in the air again.

Anyway, thank you for taking the time to read and sending my best wishes to you all

X X 

Hi T

Firstly I’m glad you have had your op done after your temp spike on the first attempt, that’s one big hurdle completed well done and all the nasties have now been removed.

Im sorry you had the shock of a small invasive element but try not to worry to much about lymph nodes being infected I have asked the same questions and my consultant told me it’s a very small chance maybe 1% in lymph’s so the odds are massively in your favour.

I also asked the question whether the closer to the lymph’s does that mean the further or less it has to travel and she said to me it doesn’t work like that, so don’t think because it’s upper quadrant it will get there quicker. 

Will he just be removing your sentinel lymph’s now ( just first two/three)?

My op is 2nd October for mastectomy, immediate implant reconstruction and sentinel lymph removal and like you I will have to wait for the pathology.

Im slightly older than you at 47 but like you still premenopausal so I get the worry about hormones running around too, though the consultant didn’t seem to think it would make much difference either. 

I know its easier said than done but try and say to yourself you have done the main part now, and try not to work yourself up about what might happen, none of us know the answers but what we do know is whatever the outcome of your next procedure, this is all caught so extremely early that we will be ok, don’t loose sight of that......I’m not.

sending lots of love

xxxx

Hi

Thanks for the reply.

I will be thinking of you on 2nd Oct and hope all goes well for you and that your recovery goes well too.  Fingers crossed for good pathology and no lymph node involvement for you.  The waiting around is always hard so I hope the next couple of weeks pass quickly for you.

It is amazing how many younger women are facing this diagnosis.

I was a bit shell shocked yesterday as I had gone in thinking positively and that he would confirm it hadnt spread so I asked no questions really.  He kept saying do you have any questions and my mind was just blank.  I could always ring my nurse up and ask but as you say, only the results can confirm what's what so I'm going to do my best to try and just plod on with the next week and just see what's what.  Just hoping for a bit of good news in all of this.  Not sure if results are instant or not???? Some hospitals test there and then apparently but not sure if mine does that.  Again, didn't ask!  He mentioned sentinel nodes yes.

Take care over the next few weeks and sending you love and best wishes

X X 

Hi,

Just wondering how things are with you at the moment?

Hope your op went well and that you are recovering well.

T xx

Hi T

Had my mastectomy on 2nd and an immediate implant.

Op went well and I’m at home recovering. I feel quite well in myself, obviously tender still but I’m better than I expected.

I had two sentinel nodes removed at the same time,so I’m waiting for results now which should be this Friday.

Keeping fingers crossed that nodes are clear an no invasive.

Im also going to have a genetic test done to see my chances on the otherside, as suggested by the consultant.

Hows things with you? Have you got a treatment plan yet or do you need to wait until your node removal?

How are you feeling about everything?

B xx

Hi T

Ive had my results back which showed no invasive and clear nodes so that’s great. The DCIS area was bigger than had shown in mammogram and was 5.5cm and she did say it was right on the margin. She is going to test now to see if ER positive with a view to Tamoxifen, but she said the recurrence rate is only 3% but meds reduce that to 2%, it’s hard to know if the side affects of meds for 5 years is worth a 1% difference.

The consultant didn’t give me the name of the genetic test all I know is she’s written a letter for me and given me a form to fill in which has to be sent to a Clinical Genetics Unit at a hospital in Birmingham, which must be the nearest place, I’m in Worcestershire, she said it will take a while before it happens. 

Have you you got your results now I’ve been sending positive vibes your way and thinking of you? It’s hard dealing with all this with covid going on too.

Im thinking of joining a local group the nurse has given me loads of information, it’s trying to deal with the psychological side too. Not sure where in the country you are but there’s a Facebook group she’s sent me too 

Take care xx