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Day 5 – Questioning the medicine

In my Day 4 post I mentioned that it bugged me (raised alarm bells actually)  me that I might need to have a major operation for something that was caledl pre-cancerous.

I’ve been thinking some more about this as the nagging thought that this seems extreme hasn’t gone away. I did some research today on the web, trying to find some fact based answers to some of my questions:

  • What’s the risk of developing cancer if DCIS is left untreated?
  • What’s the time to development if cancer does ensue
  • Why perform a masectomy if the calcification is non-invasive, and not guaranteed to lead to cancer?

I’ve come across varying conflicting information about DCIS.What is frustrating is trying to find factual information based on statistical studies etc. It’s all very well sites quoting % risk rates, but very few back it up by providing the source of that statistic. For example one site reports a 10-25% risk rate of developing cancer if DCIS is not treated. But no source information is provided. Where does this figure come from? I couldn’t even find verifiable factual information on government health sites. They talk about the rate of reocurrence following treatment, but not the risk of actually developing cancer in the first place.

Well, why avoid the risk of getting cancer at all you might say? If there was clear evidence that having DCIS results in a high risk of actually developing cancer I would concurr. But in trying to find out this simple bit of information I’m finding myself questioning the established approach to treatment as I’m finding few facts to support this.  This has been compounded by some seemingly reliable information I have found.

The only statistic I could find regarding the risk of cancer development with DCIS is in an article on the website   healthy.net. They write:

In the hard-hitting article ‘Epidemiology versus scare-mongering’, UK cancer expert Professor Michael Baum attacked health professionals for scaring women into unnecessary treatment. Baum has 30 years of experience as a breast-cancer surgeon at the Royal Free Hospital and, in his view, if left untreated, as many as 80 per cent of all DCIS cases will never become cancerous (Breast J, 2000; 6: 331-4).

This is backed up by American research aimed at quantifying the true risks of DCIS. Cancer statistician Dr Virginia Ernster, at the University of California at San Francisco, looked back over the death statistics of about 7000 women who had been diagnosed with DCIS, both before and after screening had become widespread. She found that, before the advent of screening, only 3.4 per cent of the women died of breast cancer, with the figure dropping to 1.8 per cent after its introduction. In either case, the ‘risk of death was low’, commented Dr Ernster (Arch Intern Med, 2000; 160: 953-8).[1]

And the Journal of the National Cancer Institute has a  very interesting article about DCIS. Although the general conclusion seems to be that DCIS will lead to cancer (again no real % risk rate is given) the article says:

The clinical relevance of a diagnosis of DCIS is uncertain. Although DCIS is a benign disease, women with DCIS have an increased propensity to develop invasive disease, and so therapy for DCIS is ultimately therapy for the prevention of invasive cancer. Unfortunately, the natural history of DCIS and the likelihood that DCIS will progress to invasive disease is unclear; consequently, the risk–benefit ratio of instituting potentially toxic therapy to treat DCIS needs to be considered carefully…At present, management of DCIS remains controversial, as is reflected in the various treatment options offered to patients.[2]

Links to both these sources are given under ‘References’ below so you can check them out and make up your own mind – I think they make for extremely interesting reading.

This interview with Michael Baum, also gives food for thought. Haven’t done any research on it, but if what he says is true, it’s pretty worrying.

 

 

References

[1] What doctors don’t tell you (n.d), ‘Special Report: Breast Cancer When It’s Not Cancer At All‘ [online], available at http://www.healthy.net/Health/Article/Special_Report_Breast_Cancer_When_Its_Not_Cancer_at_All/2661/4

[2] Leonard G, Swain S, (2004), ‘Ductal Carcinoma in Situ: Complexities and Challenges‘ [online] , JNCI, vol.96, no. 12, pp906-920, available at http://jnci.oxfordjournals.org/content/96/12/906.full

The madness of tomorrow

I think this will be an interesting time for me. Upheavals, surprises, shocks…all these kinds of things can make us stop and reflect (if we are sensible enough to!). Of course, any illness which could be life threatening will give pause for thought about our mortality.

Many people who have been through cancer and recovered or other illness which has brought them closer to face death have said how it impacted their life in the sense of making them value more the priceless aspects – love, family, friendship – and the preciousness of appreciating, being aware of, and engaging with what is now.

I am no exception. I’ve always been one to look constantly to tomorrow, planning, thinking about, striving for what can or needs to be done tomorrow…with insufficient thought and awareness of today. It’s a difficult thing to do if that is not ones normal mental make-up. I think actually, it’s probably quite a rare quality to have…if it wasn’t then books such as The Power of Now wouldn’t sell as well as they do.

And our modern environment and society doesn’t encourage, nor promote it. We live constantly for the future, thinking of what we need to later today, or tomorrow, next week, next month…all the while missing out on the now, for in reality now is all we have – the rest is in our minds, and hasn’t even happened yet.

Sounds simple right? Then why is it so hard to do?

 

Dealing with myself…

As expected, I’ve had a wide range of emotions since my first hospital visit. First was shock – shock that I even had anything that could be or develop into cancer.

Next came a kind of grief – grief at the thought of part of my body being cut away from me. I like my body, am generally happy with it,  and have always tried to treat it well. So thinking of have some part of it removed feels like having the loss of a good friend. Sounds weird? Maybe. But that’s just how it is.

Then came anger…anger at being in a situation where any of that could happen. Anger and not being able to control it or do anything about it if that’s what’s required to save my life in the future. I feel like it’s something potentially being thrust on me with little room for escape – have your breast remove or you could die in a few years – that’s what it boils down to. And of course that would be the sensible and logical decision to take. But ‘sensible’ and ‘logical’ doesn’t stop me from feeling anger and, to some degree, resentment at having to do something I really don’t want to, even though I know it’s the right thing to do.

Now, I think I just feel tired – tired of the emotions, tired of everything happening at once (there are other pressures in my life going on at the same time…). I think I need to cut myself some slack, not push myself so hard to do everything, and enjoy what I have a bit more. I have to deal with myself…

 

 

Day 4 – doing some thinking

Something that’s been on my mind is that the doctor used the term ‘pre-cancerous calcification’. The term ‘pre’ when I first heard it made me think that what I have is not cancerous (yet), but the way the doctor spoke it was clear that it needed removing, and it would mean my whole breast would need to be removed.

I was thinking about this again today, and did a little looking around on the web. On one site calcification was explained, but it said that usually this is benign. So why did the doctor say I would need surgery? Further research led me to the term ‘DCIS‘ – Ductal Carcinoma in situ, i.e. cells in the breast ducts have started to turn cancerous, but not spread yet. It’s an early form of cancer, with treatment being in the main surgery. The explanation I found fitted with what I remember the doctor explaining. It seems to make sense now. But I still don’t know for sure. I have to wait a couple of weeks till I get my test results…

Day 3 – Getting it checked out

Wow, this was some day…turned out not quite as I expected.

I arrived at the clinic and was in good spirits due to my assumption as to what the problem was.

A doctor examined me, confirming a lump and briefly explained that a mammogram and scan would be performed and a biopsy…

Biopsy!..I hate needles and didn’t like the thought of having to go through that. The nurse reassurred me it would be done under local anathestic and not to worry. Okay I thought, maybe I could handle that…

After a wait I was called in for the mammogram. I have never had one before, and inspite of the circumstances I found the situation very comical, and also interesting to see the machine. I had to stand in slightly awkward positions with my boob sandwhiched between clear perspex squares whilst an image was taken. It was something you might want to put in a sitcom!

After the mammogram was completed I was told to wait to be called for the scan. This seemed to be pretty straight forward. The doctor applied gel to my skin and used a similar type of equipment you get to produce pregnancy scans. I found it fascinating to be able to see the screen and see what the scan looked like. Might as well get something worthwhile from a potentially unpleasant situation!

As soon as the images had been obtained I was told I would have a Biopsy. Now, I thought I would be coming back for another appointment to do this, but no…they were going to do it right there and then. I wasn’t mentally ready for this, hating any type of  injection as I do. But the nurses and doctor were extremely supportive and one nurse held my hand – I hope I didn’t crush her fingers too much in discomfort during the biopsy!

It was over relatively quickly, including the taking of some cells under my arm to test also. But the whole process of scanning, and biopsy when I wasn’t expecting anything like that before I arrived at the clinic kind of left me a bit shaken. I’m not one to cry much or in public but this all  left mea bit  tearful. Thankfully I had a good friend with me for support…and to think I had been prepared to go on my own, not expecting any bad news. My advice…take someone with you if you can to any such like appointment.

Shortly after the first doctor saw me again to tell me the results of the mammogram. He said he was very concerned and showed me the images. From what I remember he said there was pre-cancerous calcification in one breast. He was reticent in going further with any advice  on how to proceed until the results of the biopsy (in case the cells were cancerous, and from the glands under my arm too), but he basically said the breast would need to be removed to be certain of clearing any cancer.

Wow – what a shocker! I had never, ever, expected to ever hear that. I’ve never had a major illness, don’t really smoke or drink, and consider myself quite healthy. But cancer is supposed to be genetic I think, so I guess that’s all irrelevant….

It was a lot of information for one day…the doctors and nurses were brilliant…but I still have to wait for the test results to see what will happen next…all I can think of is that there is a strong likelihood I’ll be needing surgery….

Days 1 & 2 – Discovery

Here begins a journey to I don’t know where.

Day 1 – I discovered a lump by pure chance a couple of weeks ago (was it subconciously triggered discovery). I wasn’t immediately scared or even overly concerned, having been healthy all my life, and having read before that some lumps can be cycsts – one of my friends had that experience. Nevertheless, as I tend to do I did a bit of research on the web as well as paying a visit to a doctor.

Day 2 – The doctor explained it might not be cancer but she would send me for a mamogram ASAP. As the lump was uncomfortable when touched it was also likely not to be cancer. Information I found on the web seemed to concurr. So hopefully it was something minor, and treateable…I still was not overly worried, but was glad for her sense of urgency in getting it checked out…

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