Think you need some support from them to get this moving properly. Being fobbed off is bad for any one, for you it’s a whole lot worse. 

Thanks I fully agree I'm going to speak to her tomorrow  and also tell my gp I've lost confidence  in my care team as I just dont think they are doing enough to  help me and  my mental health is suffering on top of having a 4, 5 and 13 year old to care for.

Hi Mumof3angels,

I am so sorry to hear that you are not getting the sort of treatment that we all need at this stage. Rileyroo is correct, I had a lot of trouble with my first consultant and oncologist and was treated so badly that I began to think that I was going crazy. This was basically because my surgeon refused to test a lump which appeared in my other breast 6 months after my diagnosis, yet the oncologist still wanted to carry out radiotherapy regardless of this. I point blankly refused to have any further treatment until the second breast was tested.

We reached an impasse after 11 months and, I was eventually referred to the surgeon in charge of the other surgeons in the area. He dressed me down for 1½ hours telling me that they couldn't have me deciding what treatment I wanted. I told him that I wasn't demanding treatment, but wanting a second opinion. He then took me down to a clinic and examined my breasts. He immediately ordered a mammogram, ultrasound and biopsy. Fortunately, this showed that the second lump was benign. His wife was the chief radiologist for the same hospital and she informed me that her husband would be happy to take me under his wing.

This meant travelling 1½ hours there and the same back, whereas my original hospital was only 5 minutes away from my home. Nevertheless, I accepted this kind offer and, was doubly glad that I had done so when I  found another lump in my original breast another 6 months later. This one was malignant again and he advised a mastectomy. I asked about the possibility of having a double mastectomy, given my previous history and, he agreed that this would be advisable.The difference between having a care team that I could discuss my treatment sensibly with and, that I had faith in made such a difference.

We are all etitled to a second opinion. Perhaps this might be the best thing for you to do to see if the second doctor agrees with the first?

Do please keep in touch and let us know how you get on.

Kind regards,

Jolamine xx

Good luck for today. 

So very rude

Hi Jolamine

Thanks so much for getting  back to me and for giving me such helpful  advice.

I have taken onboard  everything  you  have said and  spoken to my gp about the disgusting  treatment  I have been receiving  from my hospital consultant  and  breast nurse, and she has  advised me to wait until December when I have my next appointment  with the plastics team and go from there.

My genetics  counsellor  has also offered  her support  by suggesting  we seek a second  opinion from another hospital, however  she is worried  about the logistics in doing such  a thing in terms of me getting  there and also possibly  being put to the bottom  of their list!

I feel  like I am going mad and cant move forward  knowing about  this Brca 1 and the risks  associated  with it as my oncologist  said I'm at risk of a further breast tumour and also the ovarian  risk too which scares me to death as my mum died from ovarian  cancer.

My care team just seem to reluctant  to prioritize  any of the preventative  surgeries  knowing  how bad my anxiety  is and that  I'm living in chronic  fear on a daily basis  with the added pressure  of 3 children  to look after.

My mind keeps  going to dark places and I'm finding  it hard to switch off from these thoughts and fears.

Its all a waiting  game with no help from anyone  and I feel like a ticking timebomb and it seems rather than have the surgery that there happy for me to go down the constant screening  route than  discuss surgery sg this  stage 

At my last appointment  I was told I would provisionally  be put on a long waiting  list but they couldn't  tell me how long I would  be waiting  and that I would need to reduce my BMI further too.

My breast nurse even commented  that I could wait 5 years and she told the plastic surgeon  that I was there  today against the care teams advice and if was genetics that have pushed me to have the procedure and that it was something  they didn't  think was necessary.

I'm on diazepam for anxiety  and I keep having awful thoughts of my children seeing me in the chapel as I saw my mum and  I never got over that especially  as I never knew how ill my mum was.

I wish I could stop these thoughts but constant  fear has affected  my daily living as has all the treatment  Ive  endured over the last 12 months.

I hope all is well with you Jolamine and I really admire you for going to the lengths you went to over your own treatment.

Best wishes 

Hi hope  all  good with you.

I'm just letting  you  know that nothing has progressed  further and it's like I'm bashing my head against a brick wall, and all so frustrating!

May be time to go over the heads of the so called care team and contact the Chief exec of the hospital. Personally, I wouldn’t bother with PALS, my bitter experience with them is they are one step away from useless altho where you live they might be a bit more responsive. I’m still waiting six months after

making a complaint om a non cancer matter. 

Hi Mumof3angels,

It is hard to believe that none of your team has replied to you and, I know just how frustrating this can be. I am glad that you have mentioned your treatment to your GP, although somewhat concerned that she couldn’t help you further. She may be right however, as your plastics team will be a new team altogether and, you may be able to move on with them without having to involve the care team you have any further.

Your genetics counsellor sounds a bit more pro-active and, it certainly might be worth getting back to her if you don’t get any further with the plastics guys. You talk about the logistics of getting to another hospital for a second opinion. What is the mileage difference between accessing your current hospital and the one you might be referred to? I have an extra 3 hour round trip to my new hospital, but, it has been well worth it for peace of mind.

I had similar thoughts to yours when I was with my first Care Team – a definite misnomer, because I received no compassion or care from them. I cannot express how much better things have been since I’ve had a surgeon and care team that I can trust absolutely. I am no longer being treated like a mental delinquent and a pain in the butt. I now feel that my care team are fighting my corner, are willing to explain or discuss the need for any procedure.

Having a cancer diagnosis is worrying enough without feeling passed over and ignored at every turn. It is particularly scary when you have already lost your mum to ovarian cancer. I lost mine to secondary breast cancer and was worried that I might go the same way.

I sincerely hope that you can make some progress on this and start to move forward. Whatever you do, please don’t give up hope.

Kind regards,

Jolamine xx