Survivorship Survey

Will we be able to view the BCC submission sometime soon?

I feel that everyone who contributed to the survey should be able to see it, even if wider access is thought inappropriate?

Hi Holeybones

I will forward your query to the relevant person for their attention.

Best wishes

Lucy
Moderator
Breast Cancer Care

Alan Johnson, the Health Secretary publishes the Government’s Cancer Reform Strategy tomorrow.

The Sunday Times (page 5 of the main section) has some interesting quotes from Mike Richards the Cancer Czar:

“Survival rates are improving and more people are being cured”.

“In a third group, where patients are receiving modern treatments, the cancer is effectively becoming a chronic condition”.

Regarding the first quote, Mike Richards of all people should know that there is no cure for cancer. The best one can hope for is long term remission. Also, while survival rates are improving, they are bettered in other parts of Europe.

Regarding the second quote, I think he was determined to relabel terminal cancers as chronic regardless of the facts. Modern treatments do not guarantee survival. Some will not work at all for some patients. Some will fail after a period of time.

Well, whether secondary cancer can be chronic does depend on the type of cancer. I know a few older prostate cancer patients with secondaries who have been told that their cancers are so slow growing and responsive to treatment that they are going to die of something else before the cancer gets them. These treatments nonetheless do have unpleasant side effects. The less dangerous type of skin cancer (not melanoma) can be treated.

Some people do get cured of breast cancer, but the problem is that it is impossible with breast cancer to figure out who they are within any reasonable timeframe since breast cancer, especially the hormonal type, has an ability that is unusual among cancers to come back over twenty years later.

I think it depends on the interpretation of ‘cured’ as there is no ‘cure’ for breast cancer at the present time. I think the term ‘No Evidence of Disease’ is more fitting.

I was supposedly ‘cured’ when I hit my 5 years only for it to rear it’s ugly head again at my 10 year anniversary - so am ‘uncured’ again!!

I know of a few ladies in our support group who are 17+ years plus down the road and they see themselves still in remission.

Pinkdove

I’ve just heard the 5 pm news on radio 4, which referred specifically to “people living with cancer”, rather than “cancer survivors”. No idea if that’s the press release or someone at the BBC thinking about it.

There are people with some kinds of cancer who do appear to have been cured of it, for example some people who have had childhood cancers. Some men with testicular cancer also seem to be cured of it, even when it reaches the secondary stage due to its sensitivity to chemotherapy agents. Melanoma is curable if caught early enough. Some sarcomas ditto. Thyroid cancers are also pretty amenable to treatment in early stages. Ovarian cancer can be curable as well, in fact I know someone who had it in her twenties and is now over 50. Not to mention Solzhenitsyn who survived some kind of abdominal cancer in the 1950s and at the last count was still alive.

Some breast cancer does not come back either, I know of two women (silver surfers) I’ve met on line both over 80 who had breast cancer in the 1970s and are still very much alive. The trouble is, breast cancer doesn’t follow the norm. In cancer it is normally considered you are cured if you survive over 5 years, it doesn’t work like that in breast cancer which can be capricious. Having said that, the evidence seems to suggest that if it is going to recur most recurrences happen within the next five years, with a steadily decreasing rate from thereon

Mole

Mole

Hi Mole

You’re right with regards breast cancer - I think it was probably always on the cards for me to have secondaries - have a strong family history (am waiting to see if I carry one of the genes) and I think the only reason I went nearly 10 years of remission was because my GP had the foresight to keep me on Tamoxifen for all that time.

I think a lot of it is if it’s caught early enough your outcome is far better.

Notice in the cancer reform strategy it mentions ‘survivorship’ and ‘living with and beyond cancer’. I think ‘living with and beyond cancer’ as a term is fine - it’s all to do with our own interpretation of it.

As you say Mole some people are cured, depending on the type of cancer they have and, for some people, it will always be ‘living with cancer’

Pinkdove

Aged 78 my dad was told he had a slow growing prostate cancer and that ‘old age’ would probably kill him. He was 85 when the disease spread to his kidneys and killed him.

My brother had testicular cancer 30 odd years ago and so can probably be spoken of as cured.

And me…with a regional bc recurrence will pretty certainly die sooner or later of bc…bar that bus.

Yes I think some cancers can be spoken of as ‘cured’ but many can’t…breast cancer among them. I am so tired of all those 5 year survival stats. Five years simply isn’t long enough.

Jane

My brother-in-law had Hodgkins disease 8 years ago (age 37) supposedly a curable cancer. Following 12 cycles of chemo his consultant declared him ‘cured’, to go away and carry on with his life and not to give cancer a second thought.
Then three months later he was told it was back, very aggressive and his only chance of survival let alone a ‘cure’ was a stem cell transplant. Today thankfully he is still alive and well despite his disease being active again.
My point of this story is to highlight the fact that cancer, any cancer, even the so-called curable ones, is unpredictable and they don’t really know how any of them WILL behave only how they probably will behave.

Claire x

I think that we need to keep in mind what chronic means: “continuing a long time, as a disease,” at least according to my dictionary. Chronic does not mean that the disease isn’t a killer or even that bearable. A lot of people die of chronic diseases. In the west, AIDS is a chronic disease to the extent that the average AIDS patient is going to live over 10 years, but that doesn’t mean that there aren’t cases where the disease suddenly mutates around the drugs and patients get alot less. Alzheimer’s is a really lousy chronic disease that killed my grandfather, who also had prostate cancer for a few years at the time he died.

The problem I have with describing cancer as a chronic condition is that for most types you don’t what I would consider anywhere near a long time, especially if it has spread. For primary breast cancer, some people will be cured and therefore I would not consider the condition to be chronic. In those cases I would like more attention paid to the long-run health problems of cancer treatment survivors like heart disease, second cancers, and thin bones. My oncologist has written on bone health for breast cancer patients and yet his team did not automatically book me a bone scan even though I was chemopausal and relatively young. Thank goodness BCC has had a campaign on this, but more needs to be done. As for secondary breast cancer, there are some people who live with bone mets for a long time, even a decade, but secondary breast cancer patients overall don’t live for years and years after diagnosis, so how can this be considered chronic?

Hi forum members

Vicky from Breast Cancer Care has asked me to post this for all of you who have been following or have had some input into this.

Best wishes

Ann

Interactive Services Manager

Hello everyone

I just wanted to update you on the report on Survivorship – I am sure that everyone who took part is very keen to see the results, we completed the report last Monday for internal circulation and I am working very hard to get the report published for all those that took part to see as soon as possible. I will post a copy on the web and email it to all those on our Breast Cancer Voices mailing list.

I would like to thank all those who took part in our work on Survivorship, we had a great response and the issues raised were very important to our work, both around our response to the Cancer Reform Strategy and in the way we design and develop our own services in the future.

We have fed the results to Macmillan Cancer Support to ensure that your views are heard on what survivorship means to those affected by breast cancer. A great opportunity to talk to Macmillan personally has arisen - as part of the Cancer Reform Strategy National Survivorship initiative Macmillan Cancer Support/CSIP will be holding a user consultation event on survivorship on the 15th February. Anyone who is interested in attending should contact Rebecca Hutchinson from Macmillan on <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%72%68%75%74%63%68%69%6e%73%6f%6e%40%6d%61%63%6d%69%6c%6c%61%6e%2e%6f%72%67%2e%75%6b%22%3e%72%68%75%74%63%68%69%6e%73%6f%6e%40%6d%61%63%6d%69%6c%6c%61%6e%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> – we are particularly keen to ensure that there is a strong presence of those affected by secondary breast cancer at the event.

As I am sure you agree, it is important that the voices of those affected by breast cancer are heard so I strongly encourage you to attend. If you would like any more details, or would like to talk to me about this issue in more detail, please do not hesitate to get in touch.

Kind regards

Vicky

User Involvement Facilitator

Breast Cancer Care