Breast pain and swelling

Hi sorry to hear you are having problems. I am having some swelling and pain at present but it is because I am having Radio Therapy and I have been told it will get worse so at least I know why. 

I do get pain in the liver both when it grows and when it shrinks though so I hope that what you are experiencing is the later and the chemo is working. 

The waiting for scans is always nerve racking though, I have a scan next Sunday. Hope all goes well on Wednesday. 

Sorry for late reply I didn’t know anyone had replied. Had my scan Friday and it’s been the longest weekend ever, pain no better so hopefully I will get some answers tomorrow and hopefully it will be good news. 

Thank you for responding 

Well went for appointment yesterday to get results of CT scan and they weren’t ready, supposed to have chemo Friday but they’ve now said I have to see oncologist Friday morning as they maybe changing my chemo. Just makes me think the one I’m on isn’t working and they have seen my scan results really. So no further forward hope to get some answers tomorrow. 

Good luck for tomorrow

I know we have a system where scans are read then reported. On many occasions I have been told they cannot give the results until they are reported but they know the results as they can bring the scan up themselves. 

I have also had the results let slip by the surgeon as he thought I already knew them but was not due to see the oncologist to the following day. The most disturbing scan experience was when the oncologist thought he would be super inclusive and brought up a scan for me to see on the screen. It was actually very interesting and he was saying how positive the results were. I then read out loud a sentence which said " the disease has now spread to the liver". He looked at me and asked why I had said that so I pointed to it. He assured me it was a mistake but would check it out and get back to me within a week. After chasing it several times 5 weeks later he apologised for his mistake and told me it was right.  

But I have also had times when I felt sure there would be progression and there has been none in fact I was experiencing shrinkage on the Ribociclib before it was stopped due to funding. 

So let's hope all is well for you and if you are changed to another drug that it will be the right one. 

Thank you today has been a very long day just can’t wait for tomorrow to come 

Good luck Karen . Hope it is a good result for you.

Thank you. Went for results today and got positive and negative but good negative if that makes sense. Firstly the cancer in my liver and chest has not shrunk but positive it hasn’t grown as Dr says that’s good because I have quite an aggressive fast growing cancer. The tumour in Brest and lymph nodes under arm has grown but turns out the bruises on my breast are another type of cancer which could be HER2 negative as well as the other tumours being positive. But and this is awesome for me she’s decided to stop chemo (a) because she’s going to change the treatment as she says I have a plan B in fact several plan Bs but brilliant for me she is sending me to surgeon on Thursday to see if he will operate and do a mastectomy now some may think this is strange I want this done but 15 weeks ago she told me there was never going to be an operation as my cancer was aggressive. There is a possibility that it would have to be “An open wound” not sure what that means but hey if it helps me live I don’t care. So roll on Thursday 31st X-ray Biopsy and surgeon so I’ve got everything crossed. 

Karen

Wow Karen you are so brave and positive good luck to you. 

The deciding factor for me going ahead with the masectomy was that if it kept growing it would come through the skin and that is pretty nasty. The open wound bit is scary and I was told that at first but then after much ado it was decided that they could close the wound and I even got away without any skin flaps or grafts. 

I would just suggest you double check if they are taking the nodes as that is where my problems climaxed. The oncologist had been adamant he did not want the nodes taken or disturbed if at all possible and the surgeon went in gung how stating that the he oncologist seemed to think he could cherry pick. Obviously problems between them and I ended up suffering the consequences. 

We seem to be going in reverse directions as I was on the hormone targeted therapy and the idea was probably to go back to the chemo options. My options however are not so positive now due to the op and the options are not being mentioned. I see him in 6 weeks time so hopefully something will be offered as I will have been off meds for 4 months. 

I don't think it is odd to want the op if I had known at the outset my cancer was hereditary I probably would have had both breasts removed and I have told my daughter to be very vigilant and to not worry about having a double masectomy if there are any signs she is going to get the disease. 

It is annoying that in this day and age you have to still fight tooth and nail to get gene testing. My grandmother, mother and aunt all died of the disease and yet I was told I was classed as low risk by the breast care nurse and refused testing. When I finally saw someone they were shocked and said that although my cancer is not the common genes they are sure it is hereditary and my daughter, sisters and nieces should seek screening. 

Hope things go smoothly and swiftly for you the waiting is often the hardest. 

Thank you for your reply we are all brave and strong. I’m really trying to stay positive but obviously getting nearer to Thursday the doubts start. Just can’t believe I’m back where I started 3 months ago seeing the same surgeon part of me wants to scream why didn’t you stand your ground back then and operate. 
Hopefully get some answers soon. 
Take care and remember you too are very strong. 
Karen