crap appointment so fed up ...

i was dx in sept 2010 with tnbc had chemo and recurrence in skin while on chemo, had rads to clear skin then just after rads finished small lumps were appearing outside rad field away from mx area had them removed over two wks ago went today for follow up surgeon wasnt prepared had to go and look for results, he then came in and said they were all recurrences and i then told him i had more lumps appeared and also in my remaining breast , he just didnt seem to have a clue and said he would have a meeting tomorrow with oncologist as only have two options radiotherapy or chemo and he didnt think chemo was apt but radiotherapy would be better but didnt know if onc would do it as concerned about damage to organs with the area needing cover so have to wait til next monday but where does that leave me ?? am so sure they arent going to offer much and am so scared with these lumps popping up even though scans were good in april in the land of tnbc that stands for nothing at this stage…just needed to vent just felt the appointment was a waste and so cold and clinical… regarding rads damage to organs in my eyes the cancer will kill me anyway so surely its my choice…just wanted to update you all …thanks for listening x

Hi, I am sorry to hear all this, have you thought of a 2nd opinion, you deserive better.
Take care
Maria x

A second opn is a really good idea. I went, on the nhs, to the Marsden and they oversee my treatment now. It sounds a horrid horrid experience you have had. You have been treated very poorly. Do you have a breast care nurse you can phone tomorrow morning to talk through your options?

Cyber hugs,

Sadie Xx

I’m so sorry you have had such a worrying experience, and would really support what Sadie has said, because you need a medical team you can have confidence in.
I don’t know what area of the Country you live in, but if you are in the South East, The Royal Marsden or Charing Cross Hospital are very good. aso you don’t need to ask your current hospital to refer you, you can just tell your GP that you have lost confidence, and would like them to refer you.
Sounds like you need to act quickly though. Good luck.

HI there, really sorry you had such a horrible appointment - since I spend too much time with people in the medical profession anyway, being married to one, I think I can safely say that most, (not all) surgeons are not renowned for their skills in verbal communication so it may turn out that after they’ve had their meeting you will get a better and clearer and more sympathetic conversation with the oncologist. Dont be afraid to tell the Onc what the surgeon was like either if you want to. Having said that one of my Onc’s was terrible so …
really best of luck to you, Nicola

Hi Fairyqueen,

I agree with Nicola above. If you can - wait to see what the Onc. suggests - maybe he will have some more ideas. They are usually very careful to avoid organ damage - I’ve had rads twice to a similar area. I believe that Tina on the TN sec. thread also had rads to a wide area of skin mets and, I think, an op. too. I think she’s on hols at the moment though. I can understand your frustration - it is vile having to wait with all the uncertainty that entails. I usually ring my bcn who is excellent and has reassured and advised me on a wide range of worries - maybe try that? If you get no joy from the onc. there is no harm trying a second opinion, though that will inevitably take longer. It may be worth waiting, though, for the best treatment. Sorry you are going through this…

Sarah x

thankyou all, i got in touch with my bcn today and asked if she can find out what was discussed today so i hope she will be in touch she is really great,just hate these lumps popping up and so widespread, but again thankyou all will keep you posted love to you all rachel x

Hi Racel
So sorry to hear you are having such a rough time. I believe you are being treated at RSH and PRH, i am not allowed to mention names was your - consultant a Mr H - if so i can understand your frustrations. I have been back to see him a couple of times since my op due to various concerns and have got nowhere.
Please keep in touch with what is happening to you and fingers crossed that your onco comes up with some good ideas on what do to next as they are the ones in the know and my onco at the RSH is fantastic.
Take care

hi mel yes its mr H not very forthcoming at all, bcn is lovely though MW,
,is your onc AG at shrews ,hope you are doing well x
hope you can make out my code lol x

Hi Rachel
Yes i have same breast care nurse as you and yes she is great, my onco is supposed to be AG but i see the young one, surname begins with a T and he is great, explains everything and seems really knowledgable and enthusiastic, nothing was too much trouble. It might be worth seeing if you can see him. I met AG once and wasn’t too keen to be honest.
Have you any more news, i have got fingers, toes ,everything crossed for you.
Take care Melx

hi mel , will know more on monday will keep u posted i usually post on the triple neg recurrence thread, you take care love rachel x

I was at PRH originally - not aware that we can’t mention hospitals by name!.. well mine was Princess Royal at Farnborough. I got my GP to refer me to Marsden in London.
I’m jolly glad I got the second opinion - I would have ended up with 2 ops had I stayed with PRH

Hi Emmaasquarepeg

I recently had lumpectomy at PRH and am awaiting to see oncologist. I am TN / no nodes and was just wondering what made you transfer, prior to me having the surgery I had wondered about transferring to Marsden. I do not know what/how aggressive PRH is going to treat me but I am scared even though I apparently have no node involvement. I am 4th generation to have BC and lost my mum when I was 17 and she was only 43, the age I am now. Any information or insight to your experience and also your diagnosis would be appreciated as every time I go in for an appointment I do not feel totally confident with things. Just wondering what 2 ops and what stage you are etc. thank you

Hi Raemarie
I am so sorry to hear you lost your mum at such a young age - no wonder you’re scared. My mother had BC 5 years ago and got herself a second opinion at Marsden on the advice of a colleague. She was very fortunate to have the cancer caught before it had reached her lymph nodes, and although she had a masectomy and reconstruction, she was spared chemo, RT and HT. Had she gone with her origional hospital, she would have had a lumpectomy and according to her surgeon at Marsden, would have been back for further surgery as the cancer was too widespread to be removed with a lumpectomy.

From the outset I had no confidence in PRH. The waiting room scenario was like a cattle market and the indifference of the staff galled me. So I went back to my GP and made sure I was referred to the same surgeon who treated my mother at Marsden. He immediately sent me to have my nodes checked and it was instantly evident to them that 2 nodes were engorged and therefore my surgery would need to include the removal of the armpit nodes - something PRH missed out on totally. I had 4 positive nodes of the 16 removed.

I would tell anyone that if they do not feel confident in the treatment/care they are recieving, do not hesitate to get a second opinion.

I’m a bit fuzzy-headed today, so if I haven’t answered you fully, I’m sorry! Feel free to inbox me.

best wishes