Hello ladies, I would really appreciate any feedback on this
I have had mammogram, x-ray, ultrasound guided biopsy on both breasts at Breast Screening Office, Worthing Hospital. Told last Thursday (26 January) that right OK, but left confirmed a 11x6mm spiculate ill defined lesion malignancy - now need to undergo a left needle localisation, wide local excision and sentinel node biopsy.
Whilst reeling from this I was then immediately asked where I wanted this procedure to be done at. I chose Haywards Heath only because I live in Crawley, did not want East Surrey and felt Worthing and Brighton too far to drive back from (I’m single).
Am now being pressurised (by well meaning but far away family member) to insist on going to Royal Marsden Hospital, Sutton based on fact that they are cancer centre of excellence.
Has anyone else been through this procedure at Haywards Heath?
Sorry to hear your news. Also sorry I can’t help with hospital choice, although I now live in Brighton I had my initial treatment in London. Don’t feel pressured by well meaning relatives, you must do what is right for you. I hope someone who has experience of the Sussex hospitals will be along soon to give you some feed back.
Best wishes, Julie
I’m sorry I dont have any experience of Crawley or W.Sussex hospitals. I also live not that far from you (near Lingfield) and do go to the Royal Marsden. It isn’t too far for you - would take about 30mins if you drive. I don’t know what treatment is like at the hospitals you mention but it really is very good at the Marsden. I have been treated there for over 20 years.
I live just outside Haywards Heath and opted to be treated at the Marsden but this was mainly due to having a big op (bilateral mx, immediate recon with expanders with delayed DIEP) and as I had chemo before my surgery I had plenty of time to research surgeons etc and I had alot of confidence in the surgeon at the Marsden who specialises in oncoplastic surgery. If I hadn’t been looking at such a big op maybe I wouldn’t have been so picky. Or maybe I would have - we are dealing with cancer after all.
Hi LibranLady, I had my op @Haywards Heath but had chemo & rads at the RSCH. Was there anything in particular that you wanted to know?
Big bugs
Stella x
I think it depends on what you require. I had my mastectomy/lymph node clearance at Princess Royal Haywards Heath, and the surgery was OK. However, after surgery it was discovered that I had secondaries in the bone (my skull), and the treatment I was offered was conservative to say the least. They refused to let me have chemo (saying it would be pointless), told me I would be dead in 18-24 months, and just wanted to give me palliative treatment(endocrine therapy and bisphosphonates). I voted with my feet, and went to a London teaching hospital, where I received chemo, followed by conventional rads to the MX site, lymph area, and neck, followed by Cyberknife stereotactic rads for my skull mets. It is now 26 months since diagnosis, and I am not only alive, but my last set of scans revealed that my skull mets had not only disappeared, but had healed over, and there was no evidence of disease anywhere else.
So in my opinion, I think that if someone requires a big op, or extensive treatment they should go to somewhere like the Marsden or Charing Cross, Mount Vernon, or Barts.
hi
I live near Worthing and originally went there for treatment.I did however transfer to the Royal Marsden after going there for a second opinion.I do however still go to Worthing for my Zometa.Whilst the staff at Worthing are lovely I feel the RM are more geared up to dealing with my secondary dx.Sorry have not had any surgery in Sussex so unable to comment on any hospitals for this.
You have to make the decision on what is best for you.
Hopefully there is someone with the information you need.
While they won’t give you specific suggestions for which hospital to go to, you might find it useful to speak to the helpline. Often just vocalising the concerns you have can help to clarify them, so it would be worth having a chat with them to talk about your options.
PS Lemongrove, I always love to read your story - hearing that you’re NED after a Stage 4 diagnosis always makes me happy. Long may it continue.
Sorry couple more points I forgot to mention.
(1)The surgeon who did my MX/lymph node clearance at the PR was actually very good, and all the doctors at Charing Cross comment about what a neat job he did. If you want his details pm me (as you’re not allowed to mention names on this forum).
(2)If you need any reconstruction after your op, the Queen Victoria at East Grinstead is recognised as one of the best in the world (they established their reputation during the war, when they performed reconstruction on badly burned servicemen). I know the private arm of Queen Vic (McIndoe) treat patients from all over the world, and I know quite a few people who have had various cosmetic procedures there (including one who went to them after having a bodged tummy tuck in Texas), and the results have all been excellent.
(3)Before deciding whether to have surgery at the PR, ask if they will be giving you radiotherapy afterwards, and if they say no, ask for a second opinion at somewhere like the Marsden. I know two people that were told by the PR that they didn’t require radiotherapy, who then went elsewhere and were told they did require it. Obviously doctors have different opinions on this, but personally, I wouldn’t want to risk it.
Choccie, thanks for your good wishes - it’s nice to know someone is rooting for me.
Hi Libran Lady,
Coming rather late to this.
I was picked up by West Sussex screening and stayed with Worthing for my surgery - mastectomy and axillary clearance - and chemotherapy, even though Haywards Heath is nearer, as I liked the level of communication at Worthing, and HH does not do radiotherapy or chemo, they would refer you to Brighton for that. If I had had radiotherapy I would have had to go to Brighton.
So it seems that Brighton and the Marsden are the only ones that do all three, surgery, rads and chemo.
Journeys don’t really matter that much in my experience for surgery as the total is small, unless you have problems with seroma afterwards. Travel matters more for chemo and rads as the number of journeys adds up more. I know quite a few people who travel from Mid Sussex to the Marsden for chemo and ongoing care and they all seem to find it worthwhile.
And another cheer for Lemon Grove - Poster Girl and Campaigner for us all!