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Stage 4 -What's treatment is available, and where ?

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CS1973
Member

Re: Stage 4 -What's treatment is available, and where ?

 
Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Sorry C, I don't know about funding arrangements in Scotland, but why not start a thread asking for info. If nothing else it will alert others to the issue.
I was actually contacted by someone in Scotland (Fife), who was refused funding for Cyberknife. I recommended that they contact a journalist I know, and following their story being published in a national newspaper, they have now been given funding (so sometimes publicity helps).

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Re: Stage 4 -What's treatment is available, and where ?

Have just been told by my ONC that PET scans are not available on NHS (Scotland) for metastatic breast cancer patients. Anyone know of why this is?
C

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Hi C, well I don't think your Oncologist is out of the ordinary, because quite a few of them take the view that once cancer has spread, and is in the system, it is pointless trying to destroy secondaries because as soon as one is dealt with one, another could pop up elsewhere. However, my Oncologist takes a different view, and believes that dealing with the secondaries is an important part of treating metastatic cancer, because cancer not only spreads via the blood stream, but secondaries metastasise as well.
The thing is, if someone has a liver or lung met, it is important to deal with that, even if another is likely to pop-up, because the visceral met is the one that threatens to cause damage. In other words deal with what is causing problems, and deal with the rest if it happens.
I hope this is useful info, and hopefully it will help you to decide whether to seek a second opinion elsewhere (preferably somewhere with Cyberknife, such as Mount Vernon, or The Royal Marsden).
Good luck.

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Re: Stage 4 -What's treatment is available, and where ?

2002 lumpectomy & WLE to left breast, 0 nodes, 25 x RT & 5 years tamoxifen
2009 MX & Lymph clearance to right breast, 34/34 nodes involved (never heard of that!), 4 x FEC & 4 x TAX

This was all done in Fife (Queen Margaret) & Western General Edinburgh (QM is a satellite of Edin).

Moved to Southampton with husbands work and had 25 x Rads to chest wall & neck. Tamoxifen restarted in Dec 2009 after treatment.

Incidentally my GP in S'oton prescribed Fluoxetine alongside Tamox which I later found out is not advisable due to interactions!

I am now back in Scotland and again under oncology satellite at QM (Fife) from Western. 2 tiny lesions to liver have shown via CT & MRI along with more benign cysts. I am suspicious of hip pain (6 months) and head twinges (4-5 months).

My oncologist has now advised Zoladex and Femara only and 3 monthly scans.

Reading this thread I am really questioning this. I asked her on Friday about Chemoembolisation and was told not used for BC due to likely cells elsewhere. Asked about Cyberknife and was told similar thing. It seems that a second opinion is where I am likely to head now as I am so disillusioned. I think the reintroduction of Tamox after a second cancer developed having already been on that was not a good move.

Hopefully I can pursue another opinion now to see what else might be worth pursuing.

Thanks to everyone for sharing this info and to Lemongrove for starting it up and finding out so much already!

C

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Re: Stage 4 -What's treatment is available, and where ?

Hello

Apologies for being so damned late with this info!!

I have a genetic disposition that means I am more susceptible to certain forms of cancers.... This is called Li Fraumeni Syndrome (http://en.wikipedia.org/wiki/Li-Fraumeni_syndrome)

TREATED AT THE CHRISTIE MANCHESTER

Diagnosed July 2007 - Grade 3 Invasive Ductal Carcinoma in both breasts - Oestrogen positive
Surgery - August 2007 - Bilateral Mastectomy with tissue expansion reconstruction
Prognosis - September 2007 - Left breast: Tumour was 1.8cm (invasive ductal carcinoma) with 2.2cm DCIS (ductal carcinoma in situ) 16 nodes removed - none affected. Right breast: Tumour was 2.5cm (invasive ductal carcinoma) with 3.5cm DCIS. 12 nodes removed - 3 affected
Diagnosed with secondary breast cancer in my bones September 2007.
Surgery - October 2007 - Proximal Femoral Replacement....
Surgery - November 2009 - Laparoscopic Bilateral Salpingo Oophorectomy

Treatments had since diagnosis:
Tamoxifen, Arimidex, Exemestane, Femara, Zoladex injections, Ibandronic acid, Zometa infusion, Xeloda, Cyclophosphamide/Epirubicin. Extensive radiotherapy sessions to both hips, skull and top of spine.

CURRENTLY ON Docetaxel 3 WEEKLY INFUSIONS

Secondaries: Both sides of pelvis, left femur, sternum, left ribs, spine, extensive skull mets and minor brain mets. Also have a crushed C5 vertebrae.

My onc is amazing and is not afraid to challenge things. I will be keeping Cyberknife in mind for skull/brain mets - if this is an option the NHS will fund for me, as my husband and I are on the breadline!!!

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Re: Stage 4 -What's treatment is available, and where ?

Hello,
Treated in London
MX and immediate reconstruction. Oestrogen positive.
Chemotherapy. Radiotherapy.Tamoxifen.
Bone met. Now on Letrozole/Femara and Zometa I.V. bisphosphonate.
NHS funded Cyberknife to single spinal met.

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Re: Stage 4 -What's treatment is available, and where ?

Hospital Weston Park Sheffield

Hi I was diagnosed with BC in 2003 had a luumpectomy,chemo and radiotherapy.
Breast mets to my liver diagnosed Dec 2010 by Jan 2011 tumour preventing blood flowing into my liver so given carboplatin 6x3 weekly which shrank the tumours significantly.
Bone mets picked up on CT scan so was given 3 zometa with last 3 carboplatin and one more this week. Bone mets responding well.
Have current problem with depressed blood counts have had one blood transfusion in order to travel but the effect of this has subsided its been 7 weeks since end of my chemo.
My onc tells me there is no hope of targetted therapies as numerous tumours across my liver the largest now being .18 cms
Am triple negative.
He wants to give me taxol when my tumours grow again
I have a good relationship with my onc who gives me as much time as he can but the clinics are really full with long waiting times and I would like more discussion about alternatives
I have asked for a second opinion at the Royal Marsden
Best wishes to all of you= I do think sharing factual info like this is this is really helpful to build up a picture across the UK
Jane

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Kentishlass I hope you have not taken what I said the wrong way. I was not trying to tell you what to do. I just wanted to make you aware that the the information given by your Consultant about the availability/funding of Cyberknife was incorrect(because currently PCT's in Kent, Sussex or Surrey do not fund stereotactic radiotherapy for lung or liver mets). I only mentioned consulting the Marsden because in your postyou mentioned that at some stage you intend to consuot them.
I would never tell someone what to do - we all have to make our own decisions as far as treatment is concerned, because we each have to live with the consequences.

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Re: Stage 4 -What's treatment is available, and where ?

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Lemongrove
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Re: Stage 4 -What's treatment is available, and where ?

Hi Kentishlass,
Just to say, I'm afraid the info given by your Onc regarding the funding of Cyberknife for those with lung mets is incorrect.
All funding applications for Stereotactic radiotherapy (which includes Cyberknife, Gamma-knife, Linac and TomoTherapy), in Kent, Sussex and Surrey go to individual PCT's, and these PCT's then pass the applications to the South East Coast Specialised Commissioning Group (SECSCG). Currently the SECSCG only fund stereotactic radiotherapy for the treatment of head and neck cancers, and the only stereotactic radiotherapy they commission is Gamma-knife (not Cyberknife). I am happy to send you the SECSCG policy document if you would like to show it to your Oncologist. I am very suprised therefore that he/she has told you that they have successfully referred several patients with lung cancer for for Cyberknife. I am also surprised that he/she has told you that stereotactic radiotherapy is not suitable for liver mets - as that is just incorrect (if you look at the NRIG report which I have provided a link to in another post, you will see the Govt advisory group say it is suitable). Anyway, even if you have wide-spread mets, you might still be a candidate for Tomo-Therapy.
Perhaps a referral to the Marsden would help clarify your options (just a suggestion).

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Re: Stage 4 -What's treatment is available, and where ?

Good to hear from you Manco even though it's about Stage 4 issues... Sounds like you are struggling - is it with the dreaded fatigue?!

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Re: Stage 4 -What's treatment is available, and where ?

Hi, I m from Barrow and diagnosed 4 months ago.DCIS and no spread, thanks to God. I am glad that you are still fighting and been very brave, Im not feeling that good.Maybe see you one day. Best wishes.

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Re: Stage 4 -What's treatment is available, and where ?

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Mackers
Member

Re: Stage 4 -What's treatment is available, and where ?

Hi

As Alex has said Chemo is usually the first option...

When u hv mx it takes a couple of months, some ladies a lot longer to get over the op then that has to heal before u can hv radio. So therefore I would imagine they will give u Chemo first, as it could be three or four months until your upto having it, but everyones different.

My breast etc was very badly diseased and I had two bone mets... When I'd finished Chemo they could not find any tumours in my breast on an MRI. Still had mx and radio tho. Chemo really does work in some ladies, so there are lots of options..

I really hope the MRI proves no mets, your in my thoughts.

Tracy xxxx

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Re: Stage 4 -What's treatment is available, and where ?

Hi Laurie,

I can tell you my experience of treatment, DX in Sept 2008 with BC, DX in Nov 2008 with bone and liver mets. I had 8 chemo cycles with herceptin and pamidronate (bone juice). This was followed by MX in March 2009, I then had rads to my chest. I am now on herceptin, pamidronate and tamoxifen. I have not had reconstruction.

My advice would be to have the chemo first and then the MX. I would also insist on having bone juice with chemo if there is even the slightest suggestion that it is in your bones. There is emerging research showing that combinations of drugs produce better outcomes.

Lets hope that it has not spread.

Alex

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Re: Stage 4 -What's treatment is available, and where ?

Hi L

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Re: Stage 4 -What's treatment is available, and where ?

Lemongrove.

Thanks for keeping this thread going. I am at an early stage where I was diagnosed with DCIS and invasive tumour and positive axillary nodes at routine mammo & callback two weeks ago and have just had ct and bone scans which are "strongly suggestive" of bone and liver mets.

Have meeting with surgeon tomorrow at Kettering General and am completely clueless re options as there seems to be so much to get my head around and quite frankly my head is a bit fried at the moment since finding out I had mets last night.

Am due for Mx and clearance on 5th July (have decided not to go for recon) but now I'm wondering what they will say. Mx and then have to wait for chemo / radio? How fast do these things spread?

Apologies if this is in the wrong area

Laurie

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Just bumping so thread doesn't disappear.

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Rachel, there is a limit to the size/number of mets that Cyberknife can treat, but there is another form of stereotactic radiotherapy called TomoTherapy that you could investigate. It is not quite as accurate as Cyberknife, but it is MRI guided, so is still very accurate, and can treat larger/more extensive tumours than Cyberknife. I know that Addenbrooks have one, so maybe you could ask for a second opinion with them.
Just in case you don't know, stereotactic radiotherapy works by firing numerous narrow beams at the target tumour. Individually the beams are too weak to cause damage to healthy tissue, but when all the beams meet up at the centre of the tumour their effect is combined into a dose of rads that is so massive it can destroy the tumour. With Cyberknife, the accuracy is enhanced by a tracking facility. Cameras take thousands of images of the patient during treatment, which are fed back to the computer that is driving the whole operation- and that allows for miniscule adjustements to position.
Conventional radiotherapy fires a single wider beam, so unless the area is quite large, it can damage healthy tissue - and because it lacks precision, it is limited when it comes to treating tumours in tricky areas, and can only be used palliatively in those areas.
Hope this info is of use.

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Re: Stage 4 -What's treatment is available, and where ?

My treatment is at Norfolk and Norwich university hospital

2004 dx 1.8cm tumour lumpectomy 1/16 nodes +, chemo FEC x 6, rads x20
commenced on tamoxifen, bisphosphonates iv (azure trial).

January 2009 met to sternum, tumour marker up to 69, treatment - rads and tamoxifen swapped to arimidex, started zoladex and continued on iv bisphosphonates. tm down to 27.
2nd opinion at Royal marsden london - agreed with current treatment plan.

2010 tm rising

april 2011 tm up to 210, ct and bone scan no change, pet ct revealed mets to pelvis, spine, ribs and shoulder, lymph glands near stomach and lungs. arimidex stopped and zoladex on hold and chemo started 6 x tax. After 3 tax tm down to 54! Still on bisphosphonates, and to continue on iv pamidronate 4 weekly after chemo. After chemo finishes further PET scan and to start aromasin and zoladex.

Have asked onc for further 2nd opinion but not keen, they feel that they are offering best available treatment!! I have asked re cyberknife to mets and was told there is too many and its not appropriate!! So I am keen for 2nd opinion, I want my cancer treated agressively maybe I am wrong but I want to be sure everything is being done, I feel they just want to wait for it to keep spreading and treat as it appears. Maybe that is the only way - its just getting your head round that, its difficult....

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Thora I do apologise. When I re-read my post, it seemed to dismiss your point - which is not what I intended. I agree that it would be useful to know what the standards should be in a particular area.

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Re: Stage 4 -What's treatment is available, and where ?

Lemongrove - I do understand that local guidelines relate to one's local area. I just thought that if we had the online links to other people's 'local' areas we could see what was available there in other areas and therefore perform a comparison.

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Re: Stage 4 -What's treatment is available, and where ?

The Beacon Centre (Musgrove Hospital, Taunton)

Dx'ed with bc and bone mets together - December 2008

Started on Pamidronate and Tamoxifen, TMs continued to climb so taken off Tamoxifen

March - July 2009 - 6 x EC chemo, excellent response, primary no longer visible on ultrasound scan. Started taking Arimidex and Zoladex

Sep/Oct 2009 - 30 x rads to breast, axilla, neck, chest wall

Nov 2009 - present - still on Arimidex, Pamidronate and Zoladex, TMs have been very low until last reading where they had climbed a little above the norm, they are being retaken this month, onc is hopeful it's a blip as all other bloods tests completely normal and feeling very well

Mastectomy was mentioned following chemo, but it was felt that I had bone mets to too many different areas - not quite sure of the relevance of that. Have very minimal pain and almost never need to take painkillers

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Frances I agree that the NICE guidelines in relation to the treatment of metastatic cancer attempt to limit treatment.Did you notice that the NICE guidlelines advise doctors that they should not perform biopsies on secondary tumours, unless the primary was never biopsied. Given that secondary tumours frequently change their receptor, this guidance could potentially lead to a patient receiving innapropriate treatment, or more importantly not get appropriate treatment (and that of course could be disasterous).
Thora, local guidelines just give an idea of what a patient should expect in their area. The point of this thread is to give peeps an idea of what is available in other areas. For example, in some hospitals, if someone is diagnosed with oestrogen receptive stage 4 BC that has spread to the bone, they may be refused a mastectomy, and just receive endocrine therapy and bisphosphonates - while in another hospital/area, they might receive a mastectomy/lymph node clearance, followed by chemo, rads, localised treatments (such as stereotactic rads), followed by endocrine therapy and bisphosphoneates etc. Unfortunatley I don't know of any guide that tells patients what is available region by region (if anyone does it would be very interesting to learn about it). I know about the Doctor Foster Reports, but they compare outcomes, rather than what is available. Actually, I would recommend peeps read the Doctor Foster reports, because unlike a lot of stats, they compare like with like.

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Re: Stage 4 -What's treatment is available, and where ?

Hi Thora and others. Interesting to know there are regional guidelines - today I was reading the NICE guidelines for Advanced Breast Cancer (2009) and was struck by the limited range of options it allows and that my treatment is following the set guidance... I am thinking these restrictions really do make our Oncs want to be involved in research in order to develop treatments but to also make use of new treatments straight away when their options are very restricted. Would others agree with this suggestion on the role of research trials?

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Re: Stage 4 -What's treatment is available, and where ?

I just thought I would mention about guidelines/protocols etc but if you don't think it relevant to this thread I will delete.

Personally I am very pleased with the care I receive at Bristol, but if I had concerns my first port of call would be to check the regional guidelines to make sure they were being adhered to. They are also useful for looking up what sort of treatments follow each other and what is available.

For example, my hospital is covered by the Avon, Somerset & Wiltshire Cancer Services (http://www.aswcs.nhs.uk). The Avon, Somerset & Wiltshire Cancer Network Breast Cancer Clinical Care Guidelines (Aug 2010) are online. This is 135 pages of guidelines covering everything from how GPs should first refer patients, through primary BC care, breast surgery, order of treatments to be given, then palliative care and recommended chemotherapies, and so on and so forth. I assume similar documents are available for all regions and would give some indication of any glaring differences in treatment protocols area by area.
Thora.

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Re: Stage 4 -What's treatment is available, and where ?

Bristol Oncology Centre.
Dx 2004 BC and bone mets. ER+ Her-. No breast surgery.
EC 3 cycles - stopped, ineffective.
Tamoxifen
2005 Oophorectomy
Arimidex, then Faslodex trial, then Exemestane.
2008 mets in liver, started chemo.
Capecitabine, Docetaxel, Vinorelbine, MMM, Eribulin currently.
I have 'revisited' Tamoxifen, Letrozole & Exemestane in-between chemo regimens but with little success.
I take a daily bisphosphonate (Bondronat tablets).
I have regular CT scans roughly every 3 months as a baseline before chemo regimens and after 3 cycles to check on progress. My visible breast tumour acts as an early indication of treatment progress.
Thora.

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Re: Stage 4 -What's treatment is available, and where ?

Hi Wendy

I am in a similar situation, only 10% positive for oestrogen at the primary stage so when I had finished my treatment for that they offered me Tamoxifen and I decided against taking it as they couldn't say whether it would do any good or not. Eighteen months later I was diagnosed with secondaries and after that chemo they gave me Tamoxifen, it made me feel lousy and the cancer came racing back.

I haven't had a biopsy done on my secondary mets to test them either. I assume it is because they are all hard to get to - liver, bones and lungs. I have responded well to each chemotherapy I have had so I haven't pressed them on this. At the moment I am 'stable' so I will leave well alone for now and see what happens next!

Sue x

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Re: Stage 4 -What's treatment is available, and where ?

Thank you for the encouragement. I will let you know how I get on.

From reading other's experiences on here there are a few things that stand out for me.

Firstly, my mets haven't been biopsied. My primary was 'weakly' ER positive, HER negative. The Onc said some of the mets do seem to be ER+, others not. How does he know? And why put me solely on hormone treatment rather than chemo?

Also, I've never had tumour markers done. I know not everyone does, but they have never even been mentioned to me. I'm assuming it's down the Onc's personal preference?

I want to know why surgery/cyberknife is not an option and has never been mentioned or dismissed out of hand when I've brought it up. I do have some enlarged lymph nodes, but it's the single mets to the lung and liver that are the issue, surely?

Chaotic is a great description finty. At my appointment on Friday, he was recommending this treatment and seemed surprised when I mentioned I was only 'weakly' ER+. This was after he suggested Tamoxifen, which I was on at the point secondaries were diagnosed!

I'm not suggesting it's not the right treatment plan, but my confidence is totally shot.

Thank you all again.

Wendy
xxx

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Re: Stage 4 -What's treatment is available, and where ?

Just to add to supportive comments Wubbly from other posters. My impression is that many of us have to push to get treatment beyond surgery, chemo, normal radiotherapy and hormone treatments - Cybernknife and Tomotherapy as much more mainstream in the USA and France (I don't know about other countries...) and UK seems to be just catching up. Do keep in touch with us all - I've found so much support from others who are searching out a wider range of treatments and ways of coping with barriers to successfully getting these.
Fran
x

finty
Member

Re: Stage 4 -What's treatment is available, and where ?

Wubbly I saw your comment on the other thread and I think you are doing absolutely the right thing in getting a second opinion. Your treatment seems very chaotic and does not inspire confidence. Good luck I hope you get the answers you are looking for.

finty x

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Re: Stage 4 -What's treatment is available, and where ?

Lemongrove

I've just been for my first treatment of Zoladex today and discovered my Onc (the third in less than a year) left on Friday, the same day I saw him!

I'm seeing my GP on Thursday and I will be asking for a second opinion. The Royal Marsden is my preference I think, they seem to have a great reputation.

I have so many questions which I need to have answered.

Thank you to everyone for posting on here, you've shaken me out of just plodding on and accepting everything without question.

Wendy
xxx

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Wubbly, I think a lot of decisions do come down to funding, in that doctors know very well that only 28 PCT's out of 150 fund stereotactic radiotherapy, and these doctors rightly worry that if they refer patients they risk disappointing them.
I think as well that Stereotactic radiotherapy such as Cyberknife is also a fairly new procedure, as it only came to the UK in 2009, and it is so revolutionary, that it requires Oncologists to get to grips with a real paradigm shift - and some Oncologists are more radical than others.
Anyway good luck with whatever you decide.

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Re: Stage 4 -What's treatment is available, and where ?

Thank you Lemongrove. I think our local Freeman Hospital also have Tomotherapy and my Oncologist works out of both there and the QE in Gateshead where I am treated.

I am intending to see my GP soon, she asked me to go in to see her so she could catch up on my diagnosis and treatment with me. She is fantastic actually, so it's great idea to mention it to her. Thank you.

I do wonder if it's just down to funding?

I read earlier on here a lady posting who had been refused treatment because it could possibly only extend her life by 5 years. I could weep with anger when I read stuff like that. 5 years seems like a lifetime when you're living with this!

Thanks again Lemongrove, I really do value your advice and input.

Wendy
xxx

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Hi Wubbly, again I think you doctors are wrong to say your only option is to go private. Several NHS Hospitals have stereotactic radiotherapy (Mount Vernon, The Royal Marsden, Barts St James - and soon Derrisford will have Cyberknife, and Addenbrooks have TomoTherapy), so why not get a referral to one of those hospitals?.
If your medical team are being reticent, you could just ask your GP to refer you for a second opinion. You will still have the care of your existing team, unless you decide to transfer to a new hospital.
Again sorry for butting in, I just want to make sure you get the treatment you want.

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Re: Stage 4 -What's treatment is available, and where ?

Lemongrove, thank you for posting and commenting, I welcome your input.

I've mentioned sterotactic radiotherapy to 2 different oncologists now, neither seems in the least enthusiastic.

I had thought, with the lymph nodes, that perhaps it wasn't worthwhile, but have since realised that the lymph nodes aren't really affecting any major organ and are only slightly enlarged. Obviously the biggest concern is the mets to my liver and lung, one of each as I understand it.

Last appointment was just yesterday. The oncologist said my only option was to travel to London and pay privately and that, even then, he doubted they would do it.

I'm letting yesterday's news sink in a little, but thinking of approaching one of the private practices in London for some advice, so thank you for the encouragement 🙂

Wendy
xxx

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Wubbly please forgive me for commenting on your post, but I'm a bit concerned at the advice you have been given, and wonder if it would be in your interest to seek a second opinion with an expert in stereotactic radiotherapy. Maybe I'm not reading your post correctly, but your doctor seems to be saying that you are not a candidate for localised treatments such as Cyberknnife or TomoTherapy because your cancer is systemic - but that would mean anyone with metastatic cancer is ineligible. I appreciate that if someone with stage 4 has stereotactic rads on one area, that the cancer can still come back elsewhere, but the fact is that if a patient has visceral mets that have not been eradicated by chemo, then they need to deal with them by other means. My Oncologist takes the view that we should deal with what's evident, and worry about what might pop-up when/if it does.

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Re: Stage 4 -What's treatment is available, and where ?

Primary diagnosis Feb 2010, tumour 5cm in right breast.

Mastectomy and ANC in March 2010, 4/7 nodes positive. Weakly ER positive.

3 x FEC, 3 x Tax, though tax 2 and 3 reduced to 75% due to reaction.

15 Rads, then tamoxifen.

Secondary diagnosis of mets to liver, lungs and med lymph nodes in Feb 2011.

4 cycles of Xeloda, latest scan shows some shrinkage in nodes, though one has grown and one new node. Some progression to site in liver and some progession to site in lung. Possible new suspicious site in liver.

About to start Zoladex and Arimidex. Surgery and tomotherapy/cybertherapy not an option as there is disease that is not visible?

scottishlass
Member

Re: Stage 4 -What's treatment is available, and where ?

Sue you are EXCEPTIONAL. I was given a 50%chance of surviving 2 years and that was in the year 2000. May you continue to do well and hope you see you around for a LONG time. I am writing this from France. Hope to meet up with you later in the year. So you keep up the good work! Hugs Val X

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Re: Stage 4 -What's treatment is available, and where ?

Hi all

I don't know if any of my treatment is of use but here goes. My treatment has been delivered at Furness General Hospital in Barrow in Furness. My Oncologist works across Lancaster, Preston & Barrow Hospitals.

Diagnosis April 2007 - Neo Tango trial - Taxol X 4 + FEC x 4
September 2007 - mastectomy followed by 15 blasts of radiotherapy. My histology after my mastectomy showed that 2 out of 9 lymph glands removed were positive plus there was cancerous cells within the tissue that had not come from the lymph glands. I was offered Tamoxifen but declined as I was only 10% positive for oestrogen.

October 2009 - secondaries diagnosed in spine, liver & lungs
Straight onto chemo - Carboplatin & Gemcitabine with result of 'significant reduction' by April 2010.

September 2010 - problems with vision - metasteses in my left eye, referral to Liverpool Eye Centre - radiotherapy to eye delivered at Preston. Further scans showed tumours worse than in September 2009.
Straight onto chemo - Capecitabine plus Vinorelbine for 8 doses. Scans in January and March 2011 showed reduction.

Latest scan results due this Friday, 3rd June. Thereafter, I am being referred to Christies in Manchester to see if I can benefit from any new drugs that become available via trials etc.

I was told that I may have only 12 months to live in October 2009 however I am still here and been fortunate to have responded well to chemo thus far. I was told that I would be lucky to get to 5 years (that will be April 2012) and exceptional to get to 10 years (that will be April 2017). I am going for EXCEPTIONAL.

Sue x

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Re: Stage 4 -What's treatment is available, and where ?

thanks for bumping - this is a really useful thread for getting an insight into the diversity of treatments

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Just bumping this because it disappeared and I feel it could be useful for those wondering what's available elsewhere.

bertie
Member

Re: Stage 4 -What's treatment is available, and where ?

Just bumping again x

Lemongrove
Member

Re: Stage 4 -What's treatment is available, and where ?

Just bumping again, before thread disappears.

Lemongrove
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Re: Stage 4 -What's treatment is available, and where ?

Just bumping again

SueCheshire
Member

Re: Stage 4 -What's treatment is available, and where ?

Thought I'd posted yesterday - must have done something wrong!

Primary Jan 2006 right mastectomy,rads,chemo + 1 year Herceptin finished Herceptin Sept 2007.

Bone mets diagnosed March 2008 Hip and spine
Treated at Clatterbridge Centre of Oncology
10 radio to both areas, Chemo tax, zometa and herceptin.

Continued on Herceptin (3 weeks) Zometa (6 weeks)

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Re: Stage 4 -What's treatment is available, and where ?

Treatment at North Devon District Hospital. Initially diagnosed in 2005 right mastectomy and axillary clearance. Oestrogen +. T1,N0,M0. TRAM flap reconstruction 2006 Arimidex (Anastrazole) for 5 years.. Self diagnosed liver mets in July 2010, elevated liver function in blood results and high bilirubin,ultrasound scan and CT scan confirmed multiple liver mets in both lobes of the liver.Liver biopsy confirmed breast cancer secondaries and oestrogen + her- status. FEC chemotherapy commenced 6 weeks following initial consultation by which time further elevation in LFT's and bilirubin levels. Bone scan NAD. CT scans during chemo difficult to evaluate as 3 different machines used. However,scan following 6 cycles of FEC showed 2 spinal mets in T1 and T2 this is a new and improved scanner. My oncologist said she had been very reluctant to give me chemotherapy due to my elevated bilirubin levels hence the 6 week delay. Now LFT's and bilirubin levels all within normal limits,
Last CT scan showed improvement and stable disease. Following FEC commenced on Bonodrate and Exemestane (Aromasin) which I asked for. Oncologist suggested Letrozole but having previously progressed on Arimidex and having read some research papers I opted for steroidal rather than non steroidal aromatase inhibitor. Will go for second opinion on further progression either to the Royal Marsden or the Christie in Manchester both of which are centres of excellence.

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Re: Stage 4 -What's treatment is available, and where ?

Treatment at linda mcCartney in liverpool and Clatterbridge. Multiple secondaries to lung diag same time as primary. 2007
Lung biopsy to confirm her and hormone status.
Started tamoxifen and herceptin -tumour shrinkage and stability.
2008 bone met in sternum, cabecitbine and herceptin. Bisphosphonate started. Cabectobine not working. Switched to Arimodex plus herceptin. Radiotherapy to bone met. then Aromasin

end 2009 More progression. Applied via PCT and allowed Abraxane ( taxane-I am allergic to taxotere but no reaction to Abraxane) Continued on herceptin. Mets stable
June 2010- elective mastectomy in light of increasing positive evidence.
Nov 2010. New bone met and inc symptoms. navebene chemo- no effect.
Currently on Lapatanib and cabecitobin (funded by central cancer fund)
Also symptom control and support via local hspice and Mac nurse. BCC nurses have not been involved.
Excellent treatment from onc and multidisciplinary team
nicky

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Re: Stage 4 -What's treatment is available, and where ?

Treatment in Edinburgh.
Diagnosed 2004.
Mastectomy - negative lymph nodes - Tamoxifen for 2.5 years and then Exemestane for 2.5 years.
2008 - TRAM flap reconstruction
2009 - Spinal Cord Compression at T11, so spinal surgery and insertion of metal bits and pieces, then radiotherapy. T3 and T10 also affected.
Since then, have been on Bondronat, Adcal D3, Letrozole, then Tamoxifen (again), Herceptin and assorted painkillers.
Have had bone scans, but now have MRI and CT scans every 2-3 months.
I feel well-managed and well-supported by both my Oncologist and the secondary breast cancer nurses.
Isobel