Seen by GP who said “that side does seem a bit lumpy. let’s refer you” (thank God for her low referral threshold)
6 weeks later seen by breast doctor @ hospital who said “it’s hormonal, take evening primrose oil” and gave me a leaflet on breast pain. I pushed a bit and he said “OK I’ll refer you for a non urgent scan, it will take 8 weeks but I assure you it is hormonal, take evening primrose oil”
3 and a half weeks later had an ultrasound which showed up a dark area. Immediately had a mammogram which showed up NOTHING. Next day had tissue samples taken by core biopsy and was diagnosed 5 days later.
I want a double mastectomy as I do not trust mammograms or ultrasound to show up lobular. However my surgeon is recommending WLE unless the MRI scan shows that it’s worse than he thought.
I had an MRI scan yesterday - results tomorrow - and have been told it might show that the tumour is bigger/I have more tumours/there might be something in the other breast.
We NEED MRI scans every year. I am planning to pay privately instead of going on holiday, for the rest of my life if necessary. That’s if this has been caught in time.
In April 08 I was diagnosed as DCIS (2cm) but it was found to be Grade 2 lobular (2.7 cm) following WLE and SLNBi (3 nodes removed all clear). I had a MRI scan prior to the op to make sure there wasn’t any other lumps, but they didn’t pick up it was lobular or bigger than was found on the mamogram or ultrasound. I was told they could see lobular on mamograms and ultrasound, but that the edges are less defined/squidgy so the size is hard to determine.
Also I was advised to have chemo following a further WLE (to clear margins - as the tumour was bigger than expected) even though my lymph nodes were clear. Will have to have radiotherapy too, then hormone treatment for 10 years.
hi Liverbird, yes print it out and show it to anyone you like, I will not now be getting MRI results til Tue which mightpush pre-op assessment back and therefore surgery back - I am back to feeling suicidal with the waiting
hi I have changed my name from rosemarywine as my ex kept reading my posts, he needs to get out more, I finally got MRI results yesterday, they showed the tumour hasn’t spread, is 1.2 cm x 9 mm with 1 “iffy” lymph node (enlarged but probably/possibly not malignant) and now I’m in a dilemma whether to have WLE or mastectomy - need to decide by tomorrow - any advice? If I keep some breats tissue it can come back but if I have the whole breast off it might recur in the chest wall apparently.
PS If my ex keeps reading my posts I will keep changing my name, like a spy - do you notice I have chosen a Russian name this time? It’s like James Bond, but with an edge of Holby City. Oh and I have to have my acrylic nails removed before surgery,that was a big shock.
Does anyone know if the guide wire hurts?
I had a guide wire with WLE last week and also Sentinel lymph Node Biopsy. The guide wire didn’t hurt at all. It was a bit like the procedure for taking the biopsy. First they inject the area with anaesthetic and then, using ultrasound they pass a thin hollow wire through the tumour (bit like the core biopsy). The wire has a tiny hook on the end which stops it from coming out again. Apparently although they can feel the resistance when they reach the tumour, which is tougher than the fatty breast tissue, and of course they can also see the movement of the tumour on the scan. Then they curl up the rest of the wire and lay it flat on your skin under a dressing. I then had more mammograms to check the position of the wire. This was done a couple of hours before the operation although i met one lady who had it done the night before. During the operation I think they insert a rigid wire into the core to stiffen it up.
Hope this is not too much information for you but I like to know what is going on! Believe me, I couldn’t feel a thing and I think if you are having this done it is a good sign because I think they only do it for small tumours.
Will be thinking of you. Let us know how you get on. Looby
I have just looked back at what I posted last night and I feel bad. I think I went way OTT giving you a blow by blow account and I hope it hasn’t put you off. I just didn’t think - some people might not like to know all the details. Me - I want to know and understand everything because that way I can deal with it. So I’m sorry - it was insensitive.
Can I answer your question again -
Irina, it doesn’t hurt a bit.
I have just got a letter this morning from the hospital - I have appointment to get my results on Monday - so now its my turn to be scared. OMG the waiting just kills me. Looby x
Hi Looby,
I’m an information gatherer - I want to know everything - so thanks for telling me in such detail, and please don’t feel guilty. It made me feel much better.
Have decided on WLE and then wait for path report (takes 3 weeks) I agree, the waiting is agony. Which results do you get Tue?
Irina
Irina, I get my path results (WLE and SNB) on Monday - 10 days after op - so 3 weeks sounds a long time. 10 days is too long imo! I had 2 lymph nodes out with SNB for biopsies.
What will they do with your iffy lymph node - take it out or zap it with radiotherapy?
Hi Looby,
They are planning to take out “all the lymph nodes below the vein in my arm” and then give me chemotherapy, radiotherapy and 5 years of Tamoxifen. My cancer is oestrogen and progesterone positive hence the Tamoxifen - it was graded 2 on the biposy but they said don’t go off the biopsy, wait for the pathology report - also that will tell me if the cancer is HER-2 positive and then if it is I will have Herceptin too.
Just feel like I’'ve been run over by a bus, and I haven’t even had any surgery yet! This is not meant to happen when I’m 36! I suppose all the waiting at least makes us experts on BC. A year from now and we could be top consultants. 3 weeks is a VERY long time. Especially when 1 hour is like a usual day. But I will just have to learn patience. Let me know what happens with your SNB - I don’t think they do it at my hospital.
Irina x
Hi Irina, well it sounds like you’ve got a comprehensive treatment plan ahead of you. Much better to be safe than sorry - but it all sounds daunting before you’ve started doesn’t it. Like you, I’m trying to be patient but I want to know about everything in advance! Grrr…
You take care now and let us know what happens next!
Looby
I’m going to church soon (no atheists in foxholes etc) and then to hospital at 2, op tomorrow.Very scary. I hope they give me a sleeping tablet tonight. Will let you know how it goes,
Irina x
All the best Irina for the operation tomorrow.
What a good idea to start the day with a visit to church before the hospital admision.
I will be thinking of you over the next 24 hours as I am sure others will.
M x
We left the church because the vicar told a 3 year old (who was quietly walking about at the back) to sit down, he said “I’m the only performer here, sit down and stay still”. (It was a different church to the usual one). The 3 year old’s mum was in tears, she got her other son (who was an altar boy) and they left, the vicar said “excuse me, I’m preaching”, the mum said “excuse me, I’m going” so he said she was VERY RUDE and VERY SILLY" and then they left, he then proceeded to tell the congregation how rude and silly and disgraceful it was, so we left. You can’t make a 3 year old sit down! When my daughter was 3 she’d have said “I think you’ll find I’M the main performer here!”
So now I go to my fate without receiving the sacraments!
Waiting for the bed manager to phone to say there’s a bed free.
Thankyou everyone for your kind thoughts and I wish love to you all x