The purpose of this thread is to try and provide a resource for those who are perhaps uncertain about the treatment they have been offered, and want to go elsewhere, but don’t know where to go, because they are unsure of what is on offer.
Basically, I want people to state what hospitals offer in the way of treatment, and what treatment a hospital does not that offer. For example, for a newly diagnosed patient with oestrogen receptive BC, some hospitals offer endocrine therapy, but are unwilling to provide chemotherapy unless endocrine therapy has failed - while others offer chemotherapy immediately.
I would beg people to stick to the facts, and only mention hospital names (not names of individuals doctors), because we cannot risk anything defamatory, or emotive being said.
I will start, and would appreciate the same format:
Charing Cross Hospital:
Oestrogen receptive BC, with bone mets.
Removal of primary lymph nodes, chemotherapy, conventional radiotherapy to mastectomy site and lymph nodes, Cyberknife Stereotactic Radiotherapy, for skull metastases, Endocrine Therapy, Oral Bisphosphonates.
University Hospital Coventry
Dx May 2010, primary and bone mets. Borderline for herceptin
Femera (Didn’t work)
6xFEC. Currently on 13 of 18 weekly tax. Also on Extamensin and an anti inflammatory. Herceptin. Zometa.
Mx will be offered when possible.
My onc believes in treating my condition aggressively.
Any more. This info could help others.
Royal Lancaster Infirmary
Diagnosed July 07 primary and bone mets. 100% ER/PR+, HER negative
Chemo on neo-tango trial first - EC x 4 then Paclitaxel/Gemcitibine x 4. Neulasta given after each cycle after neuts nil after first cycle. Chemo doses kept same.
Mx and full anc Jan 08, 12/22 nodes affected even after chemo, vascular invasion and extracapiscular invasion too.
15 rads Feb 08 then tamoxifen until Sept 08
Tamox side effects awful so swopped to zoladex, arimidex and zometa. Still on those. Had slight spread in spine Xmas 10 so had a one-off rads blast to T8,9 & 10 in Feb 11.
Have checkups 6 monthly with surgeon and 3 monthly with onc unless I have any issues and onc will see me asap.
Think this is a great thread by the way.
Liz
Thanks Liz, but it wasn’t my idea. Someone posted on my thread about survival stats and suggested that if we describe what is available in the way of treatments, it would help people who may feel that they are not getting the treatment they want. I mean some may want to go for a second opinion, but don’t know where to go, and so if everybody posts, the info will help people make a decision.
Well done on starting the thread then !! I think a lot of us secondaries ladies want to ensure we can at least get a chance of trying as many things as poss to throw at this disease. I certainly wouldn’t know where to start looking when I get to the stage of existing options running out or more effective ones being available and can’t get my brain round a lot of the scientific stuff - I was a history/languages graduate…
Liz
Lesley am primary lady myself but lovely lovely friend having just been dx with secondaries having chemo at Windsor King Edward hosp and extra rads at Mount Vernon J xx
Hi all
I see my onc and his team for my liver & bone mets at the Christie Hospital in Manchester – as it’s a specialist cancer hospital, there are many oncologists based there who treat people with BC, so it’s difficult to describe what the “typical” treatment for BC mets would be there. I know a friend saw another onc and had a somewhat different treatment regime to mine, but I think my onc (and the others based there) would offer different treatments to us all, depending on the type(s) of BC we have and our responses to treatment. Of course, Christie’s can offer a wider range of cancer treatment options than might be available at other hospitals.
I’ve been on capecitabine (tablet chemo), Bondronat (tablet bisphosphonate) and exemestane (an aromatase inhibitor for ER+ BC) for many years, but most oncs I’ve heard about won’t offer chemo and a hormonal treatment at the same time – I think there’s a worry that each might impact negatively on the other. My onc told me he probably wouldn’t do it if I was starting now, but we are both worried about perhaps stopping the wrong one (my liver & bone mets have been pretty stable for some years), so I’m continuing on this rather rare “double treatment plan” for the time being. He’s a real “if it ain’t broke, don’t fix it” guy.
I’ve always considered my onc to be very well-informed about the latest BC treatments, and have benefitted from his knowledge and confidence in offering me “the best” options available. I was one of the first people with BC mets in the UK to be offered Bondronat (as a “named patient”, before it was licensed in the EU for us), and have been on capecitabine longer than anyone else who posts here on the BCC forums (Xeloda Queen!). Another example: a few months ago, there was a possibility that I’d had some progression in my liver, which meant that the capecitabine might have stopped being effective. My onc talked about a change to Abraxane, a relatively new IV chemo which is similar to Taxol but in a different mixture which reduces some of the more difficult side effects. While I really don’t want to have ANY IV chemo, I was impressed that he was offering a “state of the art” taxane, rather than the usual option.
I realise that most of us are treated in hospitals that have a cancer section or department, rather than in a specialist cancer hospital, and that my situation means that I wouldn’t have to go far for a second opinion, if I was unhappy about my treatment. But I’m not sure how we can compare treatment information to help identify survival stat “winners” and “losers”, as we’re all so different in the way our BC impacts on us, as well as our responses to treatments. Then again, we all know that there’s still a “post code lottery” for some of the newer and/or more expensive treatments, so moving our care to a different onc/hospital could at least improve our treatment options.
Hope the above is helpful – I would certainly recommend my onc (can PM or e-mail his contact details) or Christie’s in general to anyone wanting a second opinion.
Marilyn x
I go to linda Macartney-satellite of clatterbridge centre of oncology
Initially i was misdiagnosed at Ormskirk hospital. I moved to Liverpool armed with all current reasearch . My onc has made it clear from the start that we are working together.
I wanted neo adjuvant chemo 11 years ago when it was really unheard of. My treatment and diagnosis :-
Disgnosed May 2000.Tamoxifen, 4 x Ac chemo, double mastectomy with immediate recon (one prophylactic). CMF x4 and rads. ER and PR + (her not tested 3/27 nodes). Tamoxifen 6 years
Attempted femara and zoldaex, psychotic response (v rare) no treatment for a year. T12 secondary and lung nodule diagnosed 2008. Onc gave me option of chemo or femara again. Femara/zoladex/biphosphonate (my suggestion) mets stable 3 years. Original tumour retested and found to be her2 +++ therefore herceptin.
Had rads to spine considering requesting cyberknife on lung.
I trust my oncologist implicitly. She offered hope to me when I thought all was lost. She regularly attends worldwide symposiums and is upto date on research. Howver she believes treatment is a choice, she explains options, outcomes and unknowns.
I respect her knowledge, attitude and belief system.
Juliett, I think you have touched upon the thing that is so vital - choice. When there is no proven strategy for treating metastatic BC (because there is no cure as yet), and there is an ongoing debate within the medical profession about whether it is better to treat metastatic BC aggressively, or palliatively, it is important that the patient is consulted and their preference observed - and sadly that doesn’t always happen.
I posted this thread in the hope that those who feel they are not being offered this choice would be able to find out where choice is available.
Lemon grove I think it would be good to keep bumping this tread up , I am only under investigation at the moment for secondaries but it the sort of thing i will be looking at if i get bad news.
rhian
I am being treated at The Royal Marsden. I had primary bc tumour removed In Jan 2006, followed by node removal as 1/20 was affected. I then had chemo 6 FEC followed 25 rads and tamoxifen. I was diagnosed with secondary bc in Sept 2009, I had a cough and after ct scan had ct biopsy to clarify that it was breast cancer as just one tumour, quite small 12mm. I have been on femara since then and have been stable. On my last visit we talked abouot cyberknife and my Professor has written to London Marsden to see if I would benefit from it at this stage, I am waiting to hear at the moment. He didn’t mention about funding but I am now getting concerned as I have read on here recently that Surrey PCT will not fund. I have had excellent treatment at the Marsden, My Professor talks to me openly and informatively about all treatments and has done from the beginning, he is well known for his Cancer research and I have total confidence in him especially as he always listens to my views and always has time to explain everything.
Rhian, if you could bump it when you get chance that will be great.
Hi everyone,
Excellent thread, but haven’t got time to read it all yet. Have saved the thread and will read later.
All my details are in my profile, copied below:
Dx in June, 2009. Primary + bone mets. I had weekly paclitaxel + avastin for 6 months starting from July, Zometa was added in Aug.
Had tamoxfin for 4 months after paclitaxel + avastin were finished in Dec. It proved to be a complete failure.
Liver mets was dx in April, 2010, FEC chemo finished middle of Aug.
CT scan results on 01/09/2010 indicated possible no active cancer in liver. PET scan results on 22/09/2010 confirmed that.
Hormonal treatment: Zoladex + Arimidex starting date: 22/09/2010. Tumour Marker was 10 before hormonal treatment!!
Radiotherapy planning 30/9/10. treatment 11/10/10 - 5/11/10
09/02/2011 - Tumour Marker is 7, PET scan shows no activity. Zometa reduced to every 6 weeks. Continue with Zoladex and Arimidex.
April 2011, tumour marker up slightly to 9. Slightly worried, but not too concerned. Need to keep an eye on it.
I was dx at BRI (bristol royal infirmary), switched to private shortly before chemo started (healthcare at home). CT + MRI done at local spire, PET done at Cheltenham.
For me, it really depends on the consultant you are seeing and how much you know. If you ask for it and is willing to travel, then you can always get a referral. The problem is that most of the time, we don’t know what to ask. That’s why it’s good to share and know what’re available for us who have stage 4.
xx
Diagnosed with triple negative…in early 2007.had small lump no nodes,no vascular invasion.brca1 found later when my aunt decided to tell me. It was too late for me then! Had preventive surgeries. Chemo…epirubicin 2 weekly dose dense 4 followed by capcetabine .reacted to capcetabine.therefore I had only CM of CMF.3 years of remission.came back as sec in lungs.researched and found out that in US brca1 are treated more aggressively with chemo such as taxanes even node negative.my sister with same mutation has done well with taxanes ( outside UK)
Moral of the story genetic cancers particularly brca1 are aggressive and cannot be lumped with other er ,her positive cancers.they need appropriate chemo in the beginning such as carboplatin or taxanes. It will happen here as well,but we are behind US in tailored treatment.no wonder they have better survival rates.
Treated at Cheltenham Hospital
Diagnosed sept 08 with primary BC HER 2 and ER positive. Had 3 FEC then switched to taxol and herceptin Nov 08 when secondaries in spine and liver diagnosed. MX in March 09. 18 Rads to chest. Now on pamidronate, tamoxifen and herceptin.
3 weeks ago onc said he would refer me to another hospital out of area for an assessment for RFA. Not heard anything yet.
First DX Nov 2000 - Stage IIb, ER+, 5/15 nodes +ve.
Treated at Ridgeway Hospital, Wiltshire with MX and LD recon and 6 x FEC.
2003 - local recurrence (on skin of recon breast) - treated with 6 weeks of rads at RUH, Bath.
2010 - bone mets to spine and sternum - treated with Femara and Prolia 120mg every 4 weeks - at Ridgeway Hospital, Wiltshire.
xx
Treated at Royal Free Hospital and University College Hospital both in London.
Diagnosed Jan 06 with primary, stage 2 grade 3, had mastectomy with full node clearance 3/22 nodes affected. 6 x FEC followed by 25 x radiotherapy to chest wall. 90% ER positive and 70% PR positive, HER2 negative. Pre-menopausal so put onto Zoladex for 2 years and Tamoxifen for 5 years.
Sept 08 diagnosed with mets in liver and bones after coming off Zoladex - Tamoxifen evidently failed to do its job. Bone mets located in upper left arm and left hip. 6 x Taxotere started aalongside 4 weekly Pamidronate. CT scan post treatment showed partial response in liver and stable disease in bones. Changed from Pamidronate to Bondronat. Onc referred me to University College Hospital to check eligibility for RFA in April 2009. Had 3 RFA treatments for a total of 10 small liver mets, last one in December 2009. Have been NED in liver since and last CT showed healing in bones.
Now on 6 monthly scans with RFA specialist at UCH followed a week later by appointment with Onc at Royal Free.
Also insulin dependent diabetic.
Heather.x
originally treated Royal Infirmary Leicester
dx May 2009 secondary cancer(no evidence of primary) spread to lung,axilla and exstensive bone mets.
10 rads to spine to help with pain,Arimadex(did not work),Bondronat.
3 FEC/6 Taxol
ct showed lung clear but axilla spread had only slightly shrunk.
31 rads to breast to treat any cancer not evident and to axilla to try to reduce
result-shrinkage to axilla mass making it more mobile with a possibility of surgery.Femera started May 2010.
Trusted my onc completely,she realised i was really unhappy about axilla spread and treated it agressively.Always felt proactive throughout my treatment.
Now being treated Worthing
Went for first appointment November 2010.onc sent me for full set of scans MRI,ct, bone density.
Result - no spread.,bone mets stable.
plan is to give femera 6 months, and if there is no evidence of further shrinkage will be pushing for surgery.
Cannot comment on treatments available but will update as treatment progresses.Be nice to hear from anyone being,or has been,treated at Worthing.
Lucinda x
Treated at Nottingham Hospital (Breast Institute/City site)
dx April 2010 secondary cancers (right breast tumour/lymphadenopathy, liver, lung and bones) HER2 neg, ER and PR positive
complete shoulder replacement as left humerus bone nearly fractured. I think this is an unusual operation and I had a surgeon who specialised in this operation but it is rarely used for secondary cancer; nerve damage restricts elevation of arm and chemo seems to tense up muscles; 9 months physiotherapy
6 cycles of FEC immediately after operation - good partial response
Zometa for bones alongside FEC - now taking Bondronat daily
Arimidex hormone treatment - not successful.
Docetaxol (6 cycles planned but not successful so stopped after 3 as liver tumours progressing)
Currently on Capecitabine as part of research trial for Capecitabine and Vinflunine (new drug) for patients who have tried a Taxotere (I’m in the group randomized to just get Capecitabine for up to 2 years). Told that I would have been offered Xeloda even if not on trial.
Discussed future treatment plan with Oncologist will refer for liver ablation or Cyberknife if current treatment is unsuccessful. Hospital has new Tomotherapy unit but it is not commissioned yet and staff not trained.