Encounter with Dr Susan Love

Not me, of course, but a friend in New York went along to an Interview, Q & A, buffet event at the last minute a couple of days go and got to ask questions at the mic and speak to Dr Love during the evening. As a fellow METAvivor her questions were directed about the way MBC research is funded and the support that seems to be denied us by the general BC community because we are no longer classed as ‘survivors’, or do not feel that we are.

When my friend said to her that only about 2-3% of research funding in the US is spent on Metastatic Breast Cancer research Dr Love was very surprised and thought that all research funding is aimed at MBC. Is it?

Possibly because the early trial which evaluate maximum dose and then the best dose level and efficacy probably are done with those with mets. After all we are lab rats who seem to be seen as expendable, and they don’t want to risk doing these more experimental stages on Early Stagers who are the ones who will be the ones that will really get the benefits. They are looking at ways to slow down or stop metastases, but will this really help those of us for whom that process is already under way? MBC takes the risks for the benefit of Early Stage.

There is little research which is directed specifically at the effective treatment of MBC, and our needs. It is survival statistics that really matter and as there are no known cures for MBC we are not going to be on that list. Therefore we are not good PR; no one wants to hear that people still die of breast cancer because the colour PINK says that this should not be. After all it is only fairly recently that they found out that new tumours that develop can have a different hormone status to those previously formed. This makes research even more complex because what they don’t know is so much more than they do.

There is a PDF that can be downloaded from a Komen page http://ww5.komen.org/Content.aspx?id=19327357458 highlighted in blue as Research Fast Facts which I hope will open with the link below. this clearly states that between 2006 and 2012 “Susan G. Komen has invested over $91 million since 2006 in nearly 200 grants focused on metastasis”. Taking into account the donations given to Komen by various people, foundations and ‘partnerships’, and the now $600K + salary of Nancy Brinker now she has stepped down as CEO I don’t find this very encouraging. $91 Million in 7 years …

Dr Love is very much part of the main breast cancer research world and yet she doesn’t seem to grasp the difference between Early Stage and Metastatic Breast Cancer. Her attitudes have changed a lot since she had an Early Stage cancer diagnosis a couple of years ago (not breast cancer) and she can now more clearly see the patient point of view because she has been one herself. However the difference in the concepts of your treatment has been successful and you have a good chance of not having a recurrence is SO very different from being told that you cancer has spread and although it can be treated, possibly for years, you will die.

In some ways the former attitude of being cured can be unhelpful. In Scotland a few years ago they did an analysis of repeat prescription requests for Tamoxifen or Letrozole etc (possible to do because of the NHS being the central prescriber of meds) and they found that quite a sizeable percentage of women gave up taking these meds before the full course of, say, 5 years was up. This was because they assumed they were cured and didn’t need to bother, or they thought the side effects were too severe to continue. Try MBC and then tell me about side effects!

Early Stage and Metastatic Breast Cancer may be linked, but until there is parity in the understanding, acceptance and needs of the two communities they are only biologically the same disease. This is NOT good enough. Breast cancer is not only Pink. Why isn’t more done to find effective treatments for men with BC? More understanding of risks and treatments and forms of breast cancer that may effect different racial groups? More than that … some of these grants are HUGE, what are they spent on? State of the Art Labs? PR? Top salaries for some? Corporate Image of the research facilities?

Not good enough. Worldwide about 500,000 women and men will die of breast cancer this YEAR alone. Billions are donated and just seem to disappear down the rabbit hole.

Feeling better, getting worse

Things have gone more than a bit pear-shaped of late, on the cancer front at least. What were just small possible liver mets on a 22 Jan 2014 scan have rather taken off and are now causing my platelet count to drop, as well as my liver function. Last week I was switched from Letrozole to Aromasin (hormonal treatments) to try to reverse this, but the next day the oncologist that I saw called me and said I needed to go back into clinic this week and the discussion would be about chemo to get things under control.

I have not felt well for a while, very tired etc., but about 6 weeks ago I hit some sort of Perfect Storm. I had a chest infection, some kidney stones were trying to find their way out of my body (and did eventually) and even after a week on penicillin my breathing was not back to normal. I have had kidney stones for over 40 years, when I had major surgery at the age of 12 to remove some larger stones. Over the last few years this has caused some problems with my left kidney and is probably connected to my cancer treatment. Like all pharmaceutical treatments when one thing does you good, it can cause side effects that are not so good. I’m just a bit annoyed with myself that I didn’t recognise the chills and nausea as some of the worse symptoms of stones rolling. I feel much better now, but the bigger picture is not quite as rosy.

So instead of having time to allow the Aromasin to kick in, which could take a couple of months, I have to fast forward to a combo treatment of Paclitaxel and Herceptin. I prefer a more integrated approach, but time seems to be of the essence at the moment. A bit scary, but at least I know what I am facing now and the CT scan from last week, which included the head for the first time, at least showed that I have a brain with nothing in it (that shouldn’t be there of course). It did show up that the reason for my droopy left eye might be because of a bony met over the orbital lobe, but that is in the skull and not the brain.

Now I just want to get on with it all and I have started to look again at my diet, nutrition and supplements to see if there is something that I can do to help myself. My Acupuncturist is going to arrange some Traditional Chinese Herbs to help with coping with the chemo. I haven’t been taking care of myself for a while now and must learn to always put myself and my health first and not neglect my diet and nutrition. At least I have work, occupational pension and insurance plan sorted out and have been retired on ill-health grounds and can access a lump sum from the Insurance Plan on grounds of Permanent Disability.

I haven’t asked the prognosis, but the oncologist said that 50 – 66% respond to this treatment plan. The odds could be better, but then I am hoping this will all right itself as quickly as it has gone down the tube!

Awareness – post-diagnosis?

I have recently had a major progression of my Metastatic Breast Cancer into my liver. I have been thinking that I wonder if awareness actually works because doctors, and even oncologists seem to be so resistant to patients recognising symptoms.

There have been some high profile cases of young women developing cervical cancer about the age of 18 and having to fight to get recognition. One has since died. There is the case of Kris Hallenga who was eventually diagnosed with Metastatic Breast Cancer at the age of 23 but at first, and although she was aware that she had various symptoms, she still had a job to get the medical profession to take her seriously.

I have been aware that the Letrozole (Femara) has not been working for a while but although some of the signs that it has not been working are the reversal of side-effects that they list that you could get from a drug. My joints have not been as painful, my hair has gone thicker, I have more hair growing under my chin. Also increasing fatigue. But the medical profession?

I have changed GP surgeries having got fed up with those at the previous surgery asking “what do you want me to do about it?” and “come back if things get worse”, not to mention having to give a reason to the reception for deserving an appointment in the first place. To the first question … what do I want you to do about it … you’re the one with the medical degree and fancy letters after your name; you could listen to me and maybe even examine me and do some tests, rather than show me to door.

Oncologists and hospitals are not a lot better. My hospital is now running a policy of any onc seeing the patients. Because I have been stable for so long I now have my treatment at the local Hospice in the town where I live and have only had to go into the city every three months to be checked by an onc. I was supposed to be seeing the senior consultant, but haven’t seen him for about a year. In fact I only found out about this new policy when I say a third different onc and just as I was about to ask to see the other consultant, two doctors came up to talk to the co-ordinating nurse who then completely ignored me. After trying to get her attention I gave up and went back to my seat.

Surely Awareness should be for AFTER diagnosis and well are before? If you are on a drug that is working, and this is partly shown my scans and also because you are getting the side effects, why won’t they take any notice of the lack of side effects which are indicating that the course of treatment might not be working. But even making an onc aware of this are just dismissed, or that has been my impression. Even when a CT scan showed something in my liver on 22 Jan 2014 I didn’t get called back and only saw another onc on 4 March 2014 who basically just wanted to watch and wait because my blood tests were normal. They won’t use cancer markers with me so that option is not available, at the moment. I pointed out that my blood tests were normal when I had a pathological fracture of my right hip caused by a 4″ x 2″ tumour in January 2008. I had been ignored about this pain when I was dx as Stage II in September 2007. Based on this they never thought to do any other scans. Eventually my hip was so bad, and someone actually looked at an x-ray taken two months before, and I was sent straight from the chemo clinic to Orthopaedics Trauma and had a total hip replacement.

What right does the medical profession feel that it has to ignore the very symptoms that the medical authorities are so keen to get across to the public? Why do they ignore symptoms after dx, even when it is directly related to a medication and the subsidence of known side-effects which would indicate that it is no longer working.

It was interesting that I overheard a junior doctor in A&E a couple of nights ago, when I was taken in by ambulance (ER in the US) say that I knew myself very well, and the state of my disease, and also that my new GP has made a similar comment. Just a shame that my previous GP and the oncologists aren’t the same. What I find most unforgiveable with my previous GP is that I had told her about symptoms, pointed out that cancer markers done for my hysterectomy in 2002 (also breast cancer markers), told her that my mother had breast cancer and until I found a 4cm lump in my breast it was ‘go away and come back when things get worse’ alongside an attitude that I was fat and depressed. Hmmm. Of course it may have made no difference in the long run, but if someone had reacted at the time? My mother died 15 years after having breast cancer (only treatment was a mastectomy) but she died of something completely unrelated. Maybe that could have been me?

The original creator of the BC awareness ribbon has died

If you have watched the film Pink Ribbons Inc you will be aware of the story of Charlotte Haley who designed the first breast cancer awareness ribbon, which was a salmon or peach pink shade. When she was contacted by Evelyn Lauder of Estee Lauder who wanted to use it she realised that it had more to do with their profit margin than raising breast cancer awareness so she said NO. They then changed the shade of pink and used it anyway.

Since then the Breast Cancer Awareness Ribbon has been used to raise billions and has become, for some of us, the symbol of the exploitation of a disease which kills about 450,000 people globally every year. Where has the money gone? What has the money achieved in the actual ‘battle’ against breast cancer? Why does over 95% of the research funding go to early stage breast cancer research, and only 5% to Metastatic Breast Cancer which is the form of cancer which kills. It is the ultimate symbol of cause marketing to make money. Quite what has been achieved? Answers on a postcard …

December 29, 1922 – February 2, 2014 Charlotte M. Haley, the original creator of the breast cancer awareness ribbon, died February 2nd in Simi Valley, Ca. Charlotte became well known through a documentary titled, Pink Ribbon, Inc., which highlighted the profit motive behind the use of the breast cancer ribbon campaigns, that she started in 1991. Charlotte and her late husband Robert G. Haley were both active participants at the First Presbyterian Church, community theatre, Goodwill, PEO/BIL. She is survived by her three children Leslie, Nancy and Robert, 5 grandchildren, 2 great grandchildren, and her sister Iris. A memorial will be held at Trinity Lutheran Church, Simi Valley, CA. on 15 March, 2014. http://www.firstrunfeatures.com/pinkribbonsinc/ .

Published in the Los Angeles Times from Mar. 14 to Mar. 15, 2014
– See more at: http://www.legacy.com/obituaries/latimes/obituary.aspx?n=Charlotte-Haley&pid=170154738#sthash.KGGeDA4g.dpuf

Page 3 and Coppafeel

In the UK there is a newspaper called The Sun which has printed photos of topless girls on its Page 3 for as long as I can remember. It is the kind of paper that many buy it because of its ‘excellent sports coverage’. It is rather sad that in 2014 a newspaper is still using topless girls to sell papers, but it is the kind of paper that younger people read. Why is this important? The numbers of younger women who get breast cancer is rising, and often it is a case that if breast cancer presents in a younger person it is also more aggressive. The Sun is running a campaign with the charity Coppafeel to promote awareness and get younger women to check their breasts. In the UK mammography screening starts when you are 50 years old and is done every three years. However when I got my letter inviting me to have a mammogram when I turned 50 in 2010 I had to contact them to say that they were already too late because I had breast cancer and it was Stage IV. Whether you agree with Page 3 Girls or not if this gets the message over then so be it. Feminism isn’t going to help you when you have Metastatic Breast Cancer, and lets face it most of those who read The Sun aren’t really that interested in Feminism.

In the associated video the founder of Coppafeel Kristin Hallenga mentions that she was diagnosed with Metastatic Breast Cancer at the age of 23. She admits that she ignored symptoms because she didn’t think that she could get breast cancer at such a young age, and also that it took a while for her doctor to take it seriously as well. This is another big hurdle; the idea that breast cancer is a disease which only affects older woman. Not so. The majority of those diagnosed might be 60+ but we are talking about the form of cancer that affects large numbers of women. If my GP had taken me more seriously I may have been diagnosed at an earlier stage, and there were even cancer markers which are used for breast cancer that showed I might have cancer 5 years before my diagnosis. Of course this doesn’t mean that I would have been a survivor because 30% of those diagnosed with early stage breast cancer will go on to be diagnosed with Metastatic BC, but my chances might have been better. I am now 54 and 6 years down the path of Metastatic BC.

Coppafeel are trying to get the message over to teenagers and young adults that they need to be checking their breasts on a regular basis and going to the doctor if there are any changes. This is an age group that checks their weight more often than their breasts because they assume it is just ‘old people’ who get BC. But if there is one girl who takes the message seriously and not only checks herself, but also makes sure her mother does the same there will be many more under the age of 50 who will stand a chance of making it to pensionable age, and beyond. Coppafeel uses social media and text messages to reach out and will send a monthly text to remind someone to check their boobs. They use adverts and language that is different to that used by other BC charities, but again, if it gets the message over …

If younger people get used to checking themselves and know the symptoms more people can be helped. Also checking your own breasts does not have the health risks that mammograms do. Self examination can also be as effective at mammograms at finding BC, it was the way I found mine at the ago of 47.

One Must Occupy It

Keep on keeping on and tweet away.

The Sarcastic Boob

one must occupy it.As a result of social media pressure, Kohl’s has finally reached out to METAvivor.  As they open a dialog we must continue to apply the pressure.  Continue tweeting because all of your tweets have an extensive reach.  Every tweet brings both pressure to Kohls and Komen, andeducates.  Keep up the great work and continue to help METAvivor.

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Is Advocacy worth the effort?

The Pink Ribbon has steamrollered over breast cancer, and while its message might be reassuring and safe it is not the real message. The real message of breast cancer awareness is that Metastatic Breast Cancer still kills about 450,000 people globally each year. The real message is that even if the cancer is caught at an early stage about 30% of these people will have their cancer spread to other parts of the body, and when this happens modern medicine will not be able to cure them. A bit more sobering, and a bit more stark isn’t it. It is not reflected in the up beat message of the Pink Ribbon and that is why it is all but ignored.

The Pink Ribbon is not only synonymous with breast cancer, it is also synonymous with glamour and celebrity; with cosmetic companies and their pursuit of the perfect image. How can you be perfect when your body has been mutilated by the surgeon’s knife, poisoned by chemo and irradiated? Who do you associate with breast cancer? Liz Hurley, Katie Holmes or Angelina Jolie? Or someone less starry? At least Angelina Jolie tried to start some sort of awareness about the risks of breast cancer, but it was made to sound as though this genetic fault is the main cause of breast cancer. This is awareness and prevention at its most public and most glamorous; a real life ‘A List’, red carpet walking, partner of Brad Pitt, celebrity has spoken and the world has listened. The problem is that breast cancer is not that simple, and it sure as heck isn’t that glamorous. It also is not all about a lump, or a naughty gene; it is about the words ‘you have cancer and it can’t be cured’. It is also about being able to have that kind of screening and surgery at Jolie’s age, and about being able to afford the treatment in many countries.

Can’t be cured? But what happened to all that money that has been donated to find a cure, to raise awareness, and isn’t raising awareness the same as a cure? You mean actual people still die from breast cancer? Real, actual, people, die?

When Elizabeth Edwards died of breast cancer a few years ago the main focus of the coverage that I was aware of (I live in the UK so no one really knows her here) was that her husband had ratted on her, and should she forgive him. The fact that she died was secondary to her husband being unfaithful and cheated on her. It was about rescuing his political career and image as much as about the cause of her death. Why do we instantly become brave martyrs the instant we have a diagnosis of Metastatic Breast Cancer? I am sure as hell not brave and to me a martyr is someone who dies for a recognised cause. I don’t see that Metastatic, Inflammatory or Male breast cancer is yet recognised properly, or at least not by the powers that be. At the moment we are voices crying in the wilderness. They don’t see us as a challenge to their authority because they rarely even think about us at all. They do that because we don’t have a loud enough voice. And because our voices keep dying. Worst of all there are new voices that follow us and have to start at the beginning again, when they have enough to deal with already.

Advocacy is worth the effort because no one is coming forward to represent us. We have to do as much as we can until the Pink Ribbon tells the real story of breast cancer, and not just the easy slick public relations inspired message. It isn’t easy, but every time I try and do some advocacy I feel as though it is another drop in the ocean of reality and that eventually we will taken our place at the centre of the real conversation; the conversation about less toxic treatment, support and inclusion of Metastatic, Inflammatory and Male breast cancer.

There is something missing … the “Inconvenient Truth” of breast cancer

As someone who has lived with Stage IV Metastatic Breast Cancer (MBC) for over 6 years I have long noticed that there is something missing; and we are not talking about my left boob here.

When I was diagnosed with MBC I took a brief look at the statistics. Didn’t dwell there long because I decided I was not going to be in the 85% who don’t make it to 5 years ‘survival’. In fact I decided that I didn’t want much to do with stats at all because they are out of date and use data which is years old to start with. But as much as I may like the idea of ignoring the stats they keep popping up at me. Survival stats are promoted to show how breast cancer can be successfully treated, the only trouble is that they ignore the stats for MBC or Inflammatory Breast Cancer because these are a whole different ball game. In fact I have just had a Google for MBC statistics and they are hard to find. It would seem that MBC has gone AWOL.

The public face of breast cancer is the Pink Ribbon. The Holy Cow of cancer awareness, indeed it is the Cash Cow of cancer awareness. The Pink Ribbon is there to remind everyone to check their breasts and, implied in this message, if you do that and get your mammogram you won’t get breast cancer; or it will be found early and can be cured by treatment. There is the added implication that the Pink Ribbon is also in memory of those who have died of the disease … so please donate to make sure this doesn’t happen to anyone else. Yes, there we sit firmly in the background, the ever-present reason that money should be given to find the mythical ‘Cure’, there in everyone’s mind, but never a part of the conversation. We are the elephant in the corner of the room … but where is our part in the conversation?

The fact is that WE ARE THE CONVERSATION! Breast cancer isn’t an easy ride/good way to get a free boob job, it is a disease which causes more than 450 000 deaths each year with breast cancer accounts for about 14% of all female cancer deaths. The Global deaths from breast cancer is not much short of the Population of Wyoming in 2000.

Recently the US department store Kohls has teamed up with Susan G Komen to raise money for Komen and ‘start the conversation about breast cancer’. Great idea. SCREECHES TO A HALT … wait a minute. Haven’t I seen an elephant just like that in a METAvivor campaign … where is the mention of MBC?

As usual those of us living with MBC are not even on the agenda, let alone a part of the conversation.

Letter re: Komen and Kohl’s campaign imagery

Dr. Judith A. Salerno,
c/o Komen’s HQ,
5005 LBJ Freeway,
Suite 250,
Dallas, TX 75244.

Dear Dr Salerno,

I am writing to register my disappointment that Komen, in their partnership with Kohl’s department stores, has chosen to use the imagery of an elephant for their campaign, in what would appear to be a clear rip-off of the image used for the last few years by METAvivor in an attempt to get METASTATIC breast cancer to be the centre of the breast cancer debate. This is compounded by the campaign making no mention of METASTATIC Breast Cancer which actually IS the elephant in the room, and not the Pink Ribbon form of breast cancer that Komen has done so much to promote over the last 32 years.

It is especially disappointing as those of us who live with METASTATIC Breast Cancer had finally begun to think that Komen was waking up to our existence by becoming a part of the Metastatic Breast Cancer Alliance; the stated goals of which are increasing knowledge and understanding, and making progress with research; though this would seem to be just within the METASTATIC Breast Cancer community. Why is this? For fear of offending or scaring the ‘survivors’? Because it is not good for the Pink Ribbon Image of breast cancer? Because it might offend survivors, or maybe more importantly your corporate sponsors?

Here in the UK there has been a recent campaign by Pancreatic Cancer Action where people with Pancreatic Cancer use the tag line “I wish I had breast cancer” because of the false impression that breast cancer is highly ‘curable’. I wonder how often anyone in organisations such as Komen actually think about those of us with METASTATIC breast cancer; who have to live with a disease that is killing us, and yet is trivialised as a pretty pink ribbon for ‘survivors’. But do we matter to such organisations? Not really, because you know we are going to die and so will not be a problem for too long.

I hope that you will reconsider this campaign, partly because Komen will be accepting Pinkwashed money from a company which stands to make a profit from it, but worse that you are using imagery that is already linked to METASTATIC Breast Cancer which only receives about 3% of research funding, with the other 97% going to early stage breast cancer which does not kill the patient.

Yours sincerely,

Straighten up that Tiara and fly right, farewell Shelli

This is a piece I wrote In Memoriam on Inspire about my cyber friend. Missing her already.

Shelli, aka TiaraGurl died on 13 or 14 February 2014 (It is difficult to really tell with the time difference, I am in the UK). A wonderful and feisty woman who was blessed with a beautiful singing voice, Shelli was very active on facebook until recently and had a wide circle of friends who responded to her no matter what time of day it was. She was 49 years old and had a grown son, Brad, who was with her when she passed.

Shelli was first dx with Metastatic Breast Cancer in 2009 and she joined Inspire in January 2010. It had been a few months since she posted and in December 2013 she had WBR to try to deal with brain mets. She had extensive bone mets, and on 13 February 2013 she had a rod inserted into a femur, but even the pain didn’t cause her to lose her sense of humour. Evidently she used to exchange text messages in church with a friend who tried so hard not to laugh that she almost passed out. She also wore her tiara to church in her platinum blond hair (or red, or …) and I wonder if she ever wore it when she sang in the choir. I would rather like to think that she did.

Shelli is survived by her son Brad, mother Willa, three sisters, Bethanee, Karri and Kendra, and two brothers Ray and Boyd. I hope I got their names right.

She had a blog called The Dirty Pink Underbelly http://dirtypinkunderbelly.blogspot.co.uk/2013/09/bracing.html and a facebook page of the same name https://www.facebook.com/pages/The-Dirty-Pink-Underbelly/229996733712704 and the focus of her writing was the fact that Metastatic Breast Cancer isn’t PINK and it isn’t pretty and more should be known and understood about our journey. She disliked the Pink Ribbon and thought that we should have something else to represent us … see her blog.

We never met, but she became very special to me as we shared our journey. Eventually she found the strength to embrace that journey with humour and determination whilst railing against her fate and worrying what Brad would do. She gave the alligator a run for its money and got in a few good punches. Shelli make sure your tiara is well fixed in place and have fun with those wings!

Health Communications and Health Advocacy

With deep understanding, health communicators can engage and inspire change, whether in individuals or in society as a whole.


...the proactive voice of the metastatic breast cancer community...

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

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