Overdiagnosis and unecessary treatment?

Overdiagnosis and unecessary treatment?

Overdiagnosis and unecessary treatment? This was run as a front page article in The Daily Telegraph today. It states that DCIS is routinely given treatment that a ‘latent’ cancer does not require when not all DCIS will become invasive, and won’t necessarily threaten a woman’s health in her lifetime.
I had widespread DCIS and have had a mastectomy, reconstruction and will be having rads and tamoxifen. I am 40, there were no symptoms and this was detected by a mammogram that was part of a private well woman health check.
This research has really shaken me. I’m normally pretty cynical, but decided that the only way to get through the op and be a survivor was to put my faith in the doctors treatment.
My thoughts about this report are well, I’m 40 and had 12 areas of DCIS in my breast- left untreated any one could have become invasive over the coming years. No medic in the world could offer me a guarantee that it wouldn’t . Would many woman take that chance and opt to decline treatment?
But nonetheless this has introduced little doubts into my mind which are really undermining me and the faith I need to have in my treatment. I need to feel and stay strong. It’s 3 weeks since my op and I’m mostly ok but need the strength to get through the crappy bits- my reconstruction hasn’t been straightforward, I miss the body I had, I want to recover NOW etc, etc.
I’m going to ask for a written report of my biopsy results, it might help, I don’t know.
Any thoughts?
Barbara x

Stay positive Hi Barbara
I’m sorry you are having such a crap time. I was diagnosed with wide spread DCIS and a small invasive tumour in Feb and had a mastectomy with nodal clearance. When the formal lab results came back they could find no evidence of an invasive cancer. The consultant said that she had seen this a few times with small tumours and may be due to an auto immune effect form taking the original biopsies, personally I think it was from all the good will and prayers that was coming my way. Anyway the point is that I could get bitter and twisted about having unessassary surgery, but I beleive given just the the DCIS diagnosis I would still have opted for the mastectomy. I am 42 with a young family and all the resaerch that I have read states that the risk is increased of developing an invasive cancer with such extensive DCIS. For me that risk wasn’t worth taking, certainly not on one newspaper article. I get very angry when stories like this are printed as they rarely give the full facts and cause a huge amount of anguisg to people who have already been through the mill. I hope you are feeling better, I can really recommend Yoga as a way of ‘chilling out’ or wine is preety good to!
Take care
Jcakie

Thanks. Hi,
Thanks for your support. I got a written copy of my biopsy results today and it turns out that I had 11cm of DCIS in the outer half of my breast, high grade. So I feel that I’ve had the right treatment given the sheer amount of cells that could have become invasive. I also read some info on medicinenet.com, specifically an answer to a question (in the section questions to ask the doctor)about why surgery for DCIS is so radical compared with surgery for invasive cancers ie: lumpectomies and gives a pretty graphic account as to why a mastectomy can be necessary. Which reassures me, this side of surgery, anyhow. It’s worth a look- I think it’s american, seems less equivocal than uk sites, good or bad thing depending on the info you’re after.
Thanks again.
Regards,
Barbara x

peace of mind Hi again
I’m really glad you are sounding peaceful in your mind that you are having the right treatment for your diagnosis. I agree with you about some of the American sites, I looked at a hysterical one after getting lots of ‘funny’ sensations down my arm after surgery. The author was was saying that a good form of relief was ‘pot’, unfortunately from the syle of writing she must have been smoking it when she was composing !!
I’m now 8 months post surgery and life and fitness are better than ever, so hang in there and don’t feel gulity if you have a few bad days. It is such an horrendous insult to your mind and body you need to nice to yourself.

Take care, stay mellow
Jackie x

DCIS & treatment Hi Barbara
I too have been through a real rollercoaster of what is happening to me re: treatment for DCIS. I have had 2 WLEs & will be going into hospital for a mastectomy next Tuesday (yikes). I have also done alot of reading & asking questions, but the single most important bit of information was from a volunteer from this site. She had a simaler situation to us twenty years ago - she was left, but watched & the DCIS turned into an agressive tumour after 2 years. Also she is still here to tell the tale & support others. This really clarified a niggle that has been with me since my diagnosis in June this year about over treatment. It’s good to ask questions & to get all the information, but I feel that we have to trust the people looking after us & not take the risk of leaving it.
I too am 42 with two young kids and am terrified , but feel just about ready to take on this change in my body. It’s been a real process of coming to terms with what is happening.
I too will ask to see my lab report.
I wish you all the best with the rest of your treatment.
Felicity

DCIS treatment Felicity,

You have answered a question I have had rolling around inside my mind since my mastectomy 18 months ago - how do they know what happens if they leave it? Maybe that’s what they did all those years ago - after all they didn’t know then what they know now. I suppose it’s quite logical really. We have to be thankful for all those women who went through that to provide the current level of understanding.

I have become comfortable with my changed body, and only very occasionally do I have lapses where I regret what I have lost. Mostly I just get on with living life as much as I can.

I too don’t understand why newspapers have to do this - don’t they realise what effect it will have on womens’ minds?

I would still do the same again - the alternative is too risky.

Anne

good luck Hi Felicity
I’ve just read your post and am writing to wish you well for next week. It is such an ordeal but I think having kids helps to keep you focused and recover quickly. All I keep thinking about since my diagnosis in Jan is that I am going to do everything in my power to keep well so I can watch my 6 year old grow up. I don’t know what you have told your children, but I was advised to keep it simple and give info. in small chunks. This worked with my little boy who happily went off to school each day and gave the class report on ‘Mummies poorly Booby’, just what I needed!!!
Anyway I will be sending you mellow thoughts across the airways on Tues.
Take care
Jackie

For Jackie Hi
The mellow thoughts must have worked - I made it, I am still here!!! i think I feel better than I have for weeks - having nearly made myself ill worrying etc. it’s a shock - but one I can live with & learn to accept.
Just need to get better - & take it easy.
Thanks for your kind thoughts
Felicity

Barbara self and daughter were both 4 yrs out of both ends of mammo ages [me too old, D too young]. Both of us had ductal ca- the DCIS had resulted in tumours.
Had we both had mammos a few years previously when it was DCIS we’d have had surgery IN TIME. D’s ca was caught at small lump but mine was wrong end of Nottingham scale - poor prognosis.
Mammos would have been lifesavers for us- ergo mammos are lifesavers for many ladies.
No guarantees in br ca so surgery as insurance seems best option for DCIS- we’d both say YOU GOT IT RIGHT. Best wishes, dilly