Coping with a change of diagnosis/staging

Hi 

Please don't feel desperate. I had a mastectomy for lobular cancer in Nov I had I tumour 6cm and another 1cm. After biopsies it was stage 2 Had MRi which showed dodgy lymph node so had node biopsy which was positive. Had CT scan with contrast, bone scan all came back with no spread no sign of cancer anywhere else. After surgery was told I had lymph node clearance level 2. I was expecting to have radiotherapy but after surgery told 10 out of 14 nodes showed cancer.so chemo added to the plan all preventative. I was devastated but once treatment began felt I was doing all I could to make sure it was gone. I had op, 6 chemo not easy but do able and 15 radiotherapy . Have the all clear and all on the up. Try to stay strong and if you can positive as it really helps. I am nearing my first annual mamagram and am anxious about that if I am honest but after an awful year I hope I get the reassurance I seek. My cancer was graded a 2 so even the node involvement didn't change that. I have hormone tablets for next 10 years as I was ER+ PR+.. Hope this helps it is  devastating when you hear those words and different types etc have different treatments so one fit not for all. The waiting is the hard part for results etc. Good luck in fighting this bless you x

There is a point at which it doesn’t become any worse in terms of “news” and you are very nearly there - mine went from me being sent away and told there was nothing in the scans and to take painkillers last October to stage 3c grade 2 lobular with a 20cm tumour, 20/27 lymph nodes affected this June and I am now half way through accelerated chemo which is called “adjuvant” on the letters which is doctor speak for preventative.  But the fear of it spreading/getting worse is always there. As Janemb says try to  focus on the fact you are doing everything you can to get rid of it. And it’s taken me 4 out of 8 cycles of chemo to realise I need to “seize the day” and get out there and do something lovely even for an hour or two when I can as it’s a long old haul….  Even if they do say it’s stage 4 I have met people during chemo who are still going on holiday abroad, making plans and having good lives - different and not what anyone would want - but “living with” it.  They actually inspired me in that seize the day thing - I was so focussed on getting t the end of treatment I had forgotten to live now.   

I am so sorry you are going through this - so sorry any of us are - this is not our fault, we’ve done nothing wrong and living with uncertainty is so frightening and exhausting.  Try not to despair as you are going to need your energy to get through your treatment plan and let us know how you go.  It won’t keep getting worse - it will bottom out in terms of the numbers they throw at you. 

Hi

This is the worst part and not knowing doesn't help.  I have also been in the same position as you by starting off as Stage1/2 Grade 2 but after my first lumpectomy it went to grade 3 with node involvement (8 out of 18 nodes involved).  Had a CT scan with contrast but it came back clear.  I have also had further lumpectomy and chemotherapy.  I can't say it has been an easy year but it is all doable.  Somehow you will get through and I really do know how you feel as each appointment and further waiting is a nightmare.  I think of each consultation and waiting as one step closer to the end.  I was due to see my consultant at the end of this month but he has brought the appointment forward as my recent biopsy results are now back so I immediately went into the worst case scenario thought but it is more than likely because the results are back earlier than expected.  I really know how you feel and I keep telling myself it is because the treatment plan is tailored to us and not generic.   Stay positive as you are one step closer to getting your treatment plan.

Jane