Blogs Are An Educative Tool, Not Intrusive!

I went onto my FB page today catching up with various postings. I’d had a night out with a dear friend in Camden Town and he had posted pictures up. The first posting I saw on my home page was from Doug. Poor 'Doug' had gone through the rounds with his treatment. He was facing a setback on treatment due to his mastectomy wound getting infected. On his last post on FB telling others to check his latest blog posting out. I noted a individual had said they found his blog too personal and Intrusive. Instantly I thought what the hell is this individual on. Then I had to think back how someone had tried to say the same thing to me about my blog.

I understand others would sooner keep their journey private with breast cancer, but then 'Life In Transition' another blog posting came up later on about the issues with Tamoxifen that are never discussed until things go wrong. This person is now facing the possibility of  endometrial cancer.

Blogs are an important tool within cancer land because they are informative. I personally like this individual did not know Tamoxifen can cause another serious cancer. Just like I have never met a man with breast cancer. By these individuals opening up the door of their very personal journeys with cancer they are filling in gaps. And those very gaps educate all of us on treatment and the processes involved. It gives people the tools to question our treatment and move forward. Every time I walk into my Gyno office I sling questions at them. Just like when I meet my breast cancer nurse I will ask her about Tamoxifen and get her opinion. To say a blog is intrusive and too personal to me is wrong. How else are we to build up the confidence in the system that treats us unless we educate ourselves to say the  word WHY? Why do I need this treatment? Why is there not alternatives?  

I have personally been in the system too long to know do not except all straight away. The shock of receiving the diagnosis of cancer sends a person into over drive and panic. You believe that what you are told is your only alternative. Well I have learnt NO! Sometimes it is better to step back and say why? Then collect a heap of info from the net such as these blogs and slam it at your  physician.

As my husband said Sarah is on the ball she won’t let a trick slip because it is her body, her life.

To sum it up if I don't step up and show an interest in my treatment, who will?

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Ultra Sound Department V's DIY Breastlight

My six month oncology appointment has finally arrived and I have been booked in for a ultra sound. After the lovely registrar read my notes and listened to me getting straight to the point. Point one being my right breast is a very naughty breast. Point two last night I found a pea size lump on the left side. The registrar checked both my imposter and my right breast out. And decided he wanted me to have an ultra sound as a precautionary measure. The pea size lump he said may well possibly be a lymph node, but just in case he wanted it confirmed. As for my naughty right breast he said he wants the same thing done to find out if the pain is down to the return of my cyst, which to me makes sense. He found my breast to be very lumpy especially round the lumpectomy scar.

In conversation whilst the registrar was preparing the slip of paper to be taken to the ultra sound department, I said I bet you have never met a bubbly patient like me. He explained it was nice to have a patient who was staying calm. My reply was hey no good fretting over spilt milk. Besides it is better I get straight to the point, so you can sort it out.

On returning home and checking various articles I read something about a breastlight. With cancer comes the nagging question, are they missing something? And there are many scrupulous companies who have latched onto this anxiety. To some they think they are doing breast cancer patients a service to ease their anxiety created by fear, but I always question their ultimate aim and that is to part people from their money.

I had heard about the breast light before and how women are being encouraged to try it out. And I must admit spending £84.99 is tempting just to see what my remaining breast looks like under a red light. Yet another part of me is saying what is the point, after all if this new gadget was reliable why haven’t GP’s been issues them as well as hospitals. Maybe it is because its value is selling it to vulnerable women rather than keeping it as a medical implement strictly used in clinics.

What is the breast light?

The Breastlight advertises itself as a new health and wellbeing product for women. It can be used as a tool to help women notice any changes in their breasts over a period of time.
Apparently with the Breastlight you get a new view of your breasts. The Breastlight shines a harmless red light through the breast tissue so that you can see some of the details inside. That way you can get to know what’s normal for you, spot any changes and hopefully ease anxiety and build confidence.

The fact that UK Boots chemist is selling the Breastlight only backs it as a reliable tool against the fight against breast cancer, but again it is all about pound signs.

But I want to do my own evaluation/ research and if anyone reads this blog and has used the Breastlight please leave a response. I know at the end of the day there would be women just as curious as I about this gadget and how it truly fairs in breast cancer land.

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Living, Laughing and Breast Cancer

My six month oncology appointment is on the 25th and yes I don't deny I am nervous.Yet as normal I have kept myself busy by learning new tricks as I say. Although my house is still needing a good lick of paint on fresh plaster I have personally decided enough is enough. I have sat on my arse and let my husband clean up the rest of the house. I had rushed to complete two rooms and my husband thought what I did was alright. The perfectionist in me has said you know what the only way this man will learn is to treat him like he treats me. And I have had fun doing exactly that. A friend put out a request for a place to do a short film in, so I said he could use my home. It was three days of laughter and mayhem, but hey that is the life I love. My kitchen was a massacre scene from a horror movie, but it was fun. Do not get me wrong my husband had fun also whilst puffing out his plumage, and I had to clean up the mess after filming. But it was something other than my husbands company and a ticking clock.

Me holding a boom and the cameraman.

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STICK YOUR TONGUE OUT AGAINST CANCER!

Sharing the frustrations of treatment and the setbacks it creates, can lead to an outlet with humorous consequences leading to a defiant united backlash against cancer. Those affected by breast cancer hate the fact our journey is totally focused on breasts rather than the individual. Some of us who are outspoken hate the titillation media/others create to make breast cancer more palatable/saleable. After all we all know breast cancer means big bucks to certain companies. Yet as a united community that is on various forums we still find the time to show how we want cancer to be dealt with. STICK YOUR TONGUE OUT AGAINST CANCER!

Image taken at the Dark Shadows premiere..
Johnny Depp signed the poster I painted.

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Type 2 Diabetes & Breast Cancer

After Speaking to my BC nurse the other day there was something she said that did not sit right with my long term diagnosis’. If someone says something that doesn’t add up. I will investigate especially when I feel they are talking for talking sake. My treatment is being based on breast cancer not diabetes and breast cancer. Within the NHS I have noted that my type two diabetes is not brought into conversation. It is seen as a hindrance, not a trigger of the breast cancer.

On more than one occasion when speaking about my diabetes I was told I am sorry I am an oncologist not a diabetic consultant. You must speak with your diabetes consultant, but I do not see your diabetes to be a issue on treatment.

My BC nurse told me about a condition called Diabetic mastopathy. My BC nurse explained how tumours can develop in the breast tissue that are benign. It seems my last meeting and me mentioning how I was high risk where breast cancer was concerned, into her doing her own investigations on my condition. I had heard of various conditions with diabetes, but this flumped me into a false sense of what is she talking about. Her attempts at trying to reassure me were valid, but I felt she actually really knew nothing, or at least did not have the right info in front of her. I typed up benign breast tumours and diabetes in the task bar, and up came the condition and a small paragraph explaining.

Diabetic mastopathy (lymphocytic mastitis, sclerosing lymphocytic lobulitis/ductitis)

Diabetic mastopathy (also called lymphocytic mastitis and sclerosing lymphocytic lobulitis/ductitis) are small, hard masses that appear in the breast. This rare condition most often occurs in premenopausal women with insulin-dependent (type 1) diabetes. It may appear as a breast lump or an abnormal finding on a mammogram. A biopsy may be needed to confirm the diagnosis. Diabetic mastopathy does not need treatment.
Although still under study, diabetic mastopathy may be due to an autoimmune reaction. It does not appear to increase the risk of breast cancer.

Now anyone else who had not read my medical records would look at this piece of information and say, well yes that is it, but I am not a Type 1 diabetic and I am not insulin dependent. The differences between the two diagnosis is considerable with treatment. This is why I truly believe there should be a consultant that knows about these two conditions together rather than two departments that never speak. To me whilst the two departments are not communicating as in my blood results etc then there is a loop hole for error. Diabetes type 2 increases the risks of breast cancer and no-one actually knows why. Thankfully I have sense to sit up and say something and not shy away from a good debate.

My nurse had reminded me about the patient cancer advocate group committee she wanted me to attend. The invitation was due to the self help group that I am still juggling with, and a committee member inviting me along. Personally I will gather the facts together and put it in front of this committee asking why this is not happening considering type 2 diabetes is on the increase within the western world. And more should be done in treatment instead of treating diabetes as a headache. The probability of me developing a reoccurrence is increased because the two condition can thrive off each other. This in turn leaves a big question mark to how they treat me. My BC nurse also informed me I am on a ten year observation list instead of five. To me that makes me think they are aware that my issues have just begun rather than solved. I have not met anyone who is being observed for ten years with breast cancer not unless they are high risk. Being a part of this committee puts me in a place where I can debate with those that are treating me. And develop a better understanding of the treatments involved with diabetes and breast cancer at this current time.      

Type 2 Diabetes Worsens Breast Cancer Prognosis

By Aaron Tabor, MD                                                                                    

Type 2 diabetes and breast cancer are two health conditions that share some of the same risk factors and pathways including obesity, changes in insulin-like growth factors, steroid hormone changes, and changes in inflammatory chemicals produced by fat cells. In fact some research studies suggest that type 2 diabetes is linked to a 20-30% increased risk for developing breast cancer.

The impact of type 2 diabetes on breast cancer outcomes is of particular interest because it has been reported that about 15-20% of breast cancer patients have type 2 diabetes, while more likely go undiagnosed. A new breast cancer research study used data collected from 3,003 women with a history of early stage breast cancer who took part in a larger breast cancer study. For this new study, glycated hemoglobin (HbA1c) levels were used to determine diabetes status with levels between 6.5-6.9% indicating high risk for diabetes and levels of 7.0% and above indicating type 2 diabetes. Analysis of the relationships between type 2 diabetes and breast cancer outcomes in this population of women with a history of breast cancer showed that:

Hb1Ac levels higher than 6.5% (high risk for type 2 diabetes) were associated with obesity and more advanced breast cancer upon diagnosis.

Women with type 2 diabetes were about 2.4 times more likely to die from any cause.

Breast cancer-free survival was reduced with increasing levels of Hb1Ac

These study results show the negative impact that type 2 diabetes can have on breast cancer. Breast cancer patients who also had type 2 diabetes or were at high risk for developing type 2 diabetes generally had more advanced breast cancer and were at slightly greater risk for breast cancer recurrence. The interaction between type 2 diabetes and breast cancer risk appears to be very complex. Interestingly, it has been reported that breast cancer treatment drugs can effect glucose metabolism, while some type 2 diabetes drugs like metformin have been reported to decrease breast cancer risk. More well-designed human studies will need to be done to clarify this potentially important interaction between type 2 diabetes and breast cancer.

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What is Paget's?

What were my symptoms?

Itching, Soreness, Lesions and Weeping of the nipple.

When I first visited my GP January 2009 I was told nothing was wrong. It was eight months later when I was finally diagnosed with two conditions of the breast. These were Paget’s and wide spread high grade DCIS. Both conditions had been caught at a pre-cancerous stage. My first symptom I would say was down to instinct. I knew something was not right even though my nipple looked perfectly fine at that time. My nipple had an itchy tingly sensation and I would rub it constantly. I’d be stood in a queue with people all around me and I would be gritting my teeth to have a good rub. Believe it or not you can clear a queue of people when you start to itch your nipple.

Then in February 2009 I went on holiday and I developed a sore spot on the tip of my nipple. It was raw and weeping so my instinct said try antiseptic cream. I applied the cream on a piece of cotton wool and place it on the tip of my nipple, but when I took my bra off it would wrench the cotton wool off and the scab that had formed. So my next trial was to use a cream for cracked nipple and I tried this for a few months alternating between the two creams. I went back to my GP July 2009 and he started me on a course of antibiotics. It was already common practice for me to have regular bloods taken because I am a type two diabetic. So I had the full set of bloods taken and told to return in two weeks time.

What are you looking for?

Most doctors misdiagnose Paget’s because it has similarities to cracked nipple or eczema. Even I thought I had a reaction maybe to detergent or the water whilst away. It is a common mistake made and that is why it is a rare cancer. On my diagnosis I was used for an example so students could see what Paget’s looked like.

I was lucky that my cancer had remained in situ and was caught at a pre-cancerous stage. A tumor 6cm was growing laterally down my duct which was HER+++. If I had left it more than six months my story could have been different. If it wasn’t for the Paget’s I would of been sent away and told there was nothing wrong with my breast. On October 16^th 2009 I lost my entire breast and had a LD reconstruction done the same day, but I am here to tell my tale and you are able read it.

My advice for any breast complaint would be; if in doubt go to your doctors and if you are not happy seek a second opinion. It is only your vigilance that can lead to your diagnosis.

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Yum-Yum Soup... with Anti-toxins

Almost empty pan of sweet potato, red pepper & carrot soup

Lately I have gone right off eating meat and I’m in search of something that can bring my taste buds back to life. A television program called Lorraine was discussing the properties of certain foods, which I personally already knew all about. I’m just like most people too bloody lazy to put it into practice.

I was driven to my fridge to see what was on offer. I needed colour anything with colour has anti-toxin properties...

Various types of Cheese (Love cheese but my cholesterol is high right the mo)
Various sauces & jams
Milk
Fruit juice
Apples
Kiwi fruit
Potatoes
Carrots
Mushrooms
Onions
Celery
In other words not much... with colour

Anyone who knows anything about a diet for diabetes (musts) is to look for fresh vegetables or fruit with colour. You must avoid the beige coloured foods such as potatoes, pasta, white bread etc... I mean there is a reason why honey bees go mental on a deep yellow flower. And buzz right on by when they see a white crusty loaf.

So after completing some more glossing of skirting boards and cleaning up the window frames of grease etc I popped to the shops in my paint covered jog pants. (This is London not down with the crew when you're covered in paint, but what the hell!)

I browse the Vegetable area in co-op to see what they have to offer. Ha-ha I say to myself a nice red pepper. Lucky me they also had sweet potato which beats the beige white potato’s in my fridge. I also grabbed a French stick sorry I love my white bread too much, not keen on wholemeal.

I head home with my booty of colour in hope my taste buds will be thankful and stomach.

First I grab two cloves of garlic and roughly chop them up. Followed by an average onion from the fridge (I wanted red but co-op failed to help on that one) which I diced up. I place both of these in a large saucepan with some olive oil to sweat off. Next I peeled my large sweet potato and cubed up. Grabbed four small carrots from the fridge peeled and sliced. Then deseeded the red pepper and roughly diced. I placed two small Maggie vegetable stock cubes in some boiling water to dissolve. Once my onions and garlic had finished sweating I added the stock and prepped vegetables into the large sauce pan with a pinch of mixed herbs. I leave to boil until the sweet potato is soft. Then I transfer all into a blender and zap... 20 mins later a fresh bowl of soup and my taste buds loved it... has a very unusual rustic earthy flavour yum-yum!

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