Contacts for cancer survivors

Survivors help themselves

The NHS has promised a list of helpful contacts when dealing with Long
Term Side Effects from cancer drugs – by 2018! !!

We need a list NOW.  The NHS says it can’t be done – so that got me started.  I asked around and here are some contacts.  I would welcome any names or centres to add.

Let’s get better post cancer survival rates

If we could get help when faced with unexpected side effects, this surely will improve survival rates to  reach those experienced by Europeans who have Consultants specialising in this area.

In UK we often have to seek these people out ourselves.  I couldn’t get a referral to some, so went privately, and then they could slide me in to NHS system – no need to beg a GP!

 

Heart Problems caused by side effects of cancer drugs:

LyonThe Royal Brompton Hospital – in particular Dr. Alexander Lyon

whose specialist interest this is. When I first consulted, he moved fast.

Late November we talked about problems cancer drugs cause the heart, and what had happened to mine. Originally I consulted him provately, but he also works on the NHS.

Next appointment two he and his team mapped out a plan of tests, stretching in to January.  Results have been discussed on phone, and I saw him end January -this was  on NHS.  My mind is reeling with all the helpful information that was discussed.  I now know why I have so many other medical problems (apparently more long term side effects of drugs) and have a clear plan of action!

One of the tests I had was 24-hour Blood Pressure monitoring;  this has also helped me with mapping out what treatment I need for Neuropathy;  according to US research, high BP is a side effect of this.  But trying to convince my GP to sort this out – you know the battles we have!

But I it was only because a friend said “you ought to see him” (that this started.  My GP’s surgery is near by  – but never a mention!  Whatever the Minister of Health says, GPs just DON’T have time to keep up with what we need – we HAVE to sort out our care ourselves.

High Blood Pressure  US research has discovered that this often caused by drug side effects.  One result of Dr. Lyon’s investigations is results of a 24 hour test, which I can now take to a doctor – WHEN I find someone who is dealing with and understands this.  Anyone have any ideas?

Lymphoedemia – Stockings and other treatment didn’t work on me, so the British Lymphoedema Society recommended Sossi Yerrisian.  £80 an hour for bi-monthly MLD treatments with her,  which has zapped the problem.

Nails I really felt a foo complaining about splitting nailsl, but getting dressed, when your split nails catch in everything, is painful.  And as for shaking hands ……!  After years of embarrassed complaining, and feeling doctors thought I was making a fuss over nothing, someone at La Roche Posay told me to go to Dr David Fenton. Working in Harley Street, he also does NHS work at Guys and St. Thomas.  After trying several things, he put me on Solvazinc zinc tablets (obtainable on prescription).  Now my nails are split-free, and have even grown enough that I sometimes have enough to file down!

Other drug side effects

Dr. Rose again, in conjunction with the British Heart Foundation, has written a brilliant booklet Heart Health and Cancer Treatment,   This is useful for all survivors, as we seem to gather drug prescriptions like mad;  once a doctor has their prescription pad out on the desk, there seems to be a compulsion to write something on it.  Surprisingly, when I see my private doctor, I hardly ever get given one – when you have to actually pay cash for pills, it’s another matter!  Pages 47 – 51 lists ‘fashionable’ drugs, like Lisinopril, Atenolol, Atorvastatin, Simvasgatin, Furosemide,Aspirin, etc. and possible side effects.  If you have been suffering Diarrhea, Vomitting, Indigestion, Dry Mouth etc. it might be a side effect of one of these.

Skin Problems as side effect of drug. If you getHeel  itchy skin,  Flexitol make a Skin Balm and Heel Balm (for feet) both of which are obtainable on prescription.  Otherwise go to Skin categories on right hand side of page. http://after-cancer.info/category/skin/

There are other medics with an interest in this subject, but I hesitate to recommend them as they are SWAMPED.  But if there is one who has room for new patients, or a hospital that welcomes new patients, let me know at verite@greenbee.net.

GPs – is yours helpful?

After treatment finishes in hospital, we are told we will now be cared for by our GP.  Some GPs regard us with dismay, seeing us as a drain on their budgets.  So it can be left to you to find what you need.

Recently National Audit Office and Macmillan announced that the UK has some of worst post cancer survival rates in Europe.  About 25% of survivors have major medical problems with long term side effects from drug; these sometimes appearing years after treatment ends. If GPs can’t or won’t help, it’s something we must do ourselves.  If you have enough funds, you can go abroad, where specialist doctors deal with survivorship issues.

Don’t be put off by GP sneers over “Dr. Google”, just go on overseas websites, particularly those in US, and marvel at how our cancer hospital puts up videos showing off Celeb fundraising parties – the Americans focus on clear, informative and interesting videos giving us accurate and useful information

So -contacts I have found on Internet

Most cancer types have their own line dedicated to a particular cancer, but there is nothing to stop you looking, or asking for help for general problems.  Some well-known Helplines are :

  1. Breakthrough Breast Cancer
  2. Breast Cancer Care
  3. Prostate Cancer (has an excellent Forum with chat about drugs and side effects)
  4. Jo’s Trust (Cervical Cancer)
  5. Macmillan
  6. Maggie Centres
  7. The Haven
  8. Cancer Research UK CRUK

N.B These all offer excellent help, but because some are geared towards offering NHS approved advice, you may find more up-to-date information if you try American websites.

And don’t expect any Helpline Advisor to point you towards any treatment option abroad, if we can’t handle it in UK.  For some reason the British system doesn’t look further than our shores – and doesn’t acknowledge that sharing knowledge could be the way forward.   Or least suggest good official websites abroad.

American websites

Britain may have set up the World Wide Web – but boy, the Americans are showing us how to use it for the benefit of cancer survivors.

These are sites I visit regularly.  They are run either by the US Government, famous cancer hospitals (streets ahead of ours) or American Cancer charities.  What I like about them is their frequent use of short, informative and easy-to-understand videos.

Incidentally, both Livestrong and Susan G. Komen for the cure have had problems recently, but seem to have risen above them.

ASCO – American Society of Clinical Oncology

Cancer.net

Try these links:  http://www.cancer.gov/cancertopics/types/breast/beyond-cancer-video

http://www.cancer.gov/cancertopics/types/breast/beyond-cancer-videos Ce

Memorial Sloan Kettering Cancer Hospital

MD Anderson Cancer Center

Mayo Clinic

Dana-Farber/Brigham and Women’s Cancer Center

Johns Hopkins Hospital

University of Washington Medical Center

Massachusetts General Hospital

UCSF Medical Center

UCLA Medical Center

Stanford Hospital and Clinics

Livestrong

Susan G. Komen for the Cure

And good luck!

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