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Knowledge is a dangerous thing

12 REPLIES 12
Guest user
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Re: Knowledge is a dangerous thing

Hi Cathy

Have put a new post on the DCIS/LCIS thread that was concerning your treatment.

Jo xx

ForumMember
Member

Re: Knowledge is a dangerous thing

I agree that too much knowledge of the wrong sort is a bad thing. The information for example on this forum is not always going to be accurate as we all know how we can misunderstand what we are told. Also, the only person who knows exactly what you need is your doctor who has all the information in front of him and has access and reads (hopefully!) all the latest up to date information in order to help him/her make their decisions. As for the article in the Mail, I would take that with a pinch of salt. The Mail are notorious at getting their facts muddled up through poor editing and sensationalism, so may not be correct. Even if the 70% of DCIS only need lumpectomies, that means that 30 out of a hundred women need a mastectomy, which is not a small number. Perhaps many women are given mastectomies or have surgery unecessarily, but until someone discovers a way of knowing who will and who won't, do you really want to take that chance?

At the moment, I would tend not to read too much into the medical advice on these forums. They are great for debates, personal issues etc but I wouldn't base my clinical treatment soley on the basis of what I read on here (no offence to anyone). What you need to do, is get your doctor or BC Nurse to give you more information about your particular case.

Guest user
Not applicable

Re: Knowledge is a dangerous thing

Hi Horsemad -

Still thinking about you lots.

Have answered on your other 'darker' thread - glad you have this one too. Hope things are becoming a little clearer for you,

i had my mastectomy in May for widespread DCIS and had immediate recon (to a degree - it's a work in progress) which had helped, I think.

I agree that reading ahead doesnt' help. It's just scary,and you have enough to deal with now. the actual mastectomy operation is ok - even with the recon (which turns it into a huge op) it was ok, and the recovery was much quicker than I anticipated.

Keep adjusting - a live saved is so much more attractive than the alternative, and you are currently in that positon

Big Love Td xxx

Jo_BCC
Member

Re: Knowledge is a dangerous thing

Hi Horsemad,

If you would like to give the helpline a call you can have a chat with the staff here about the pros and cons of mastectomy which may help you make an informed decision. Calls are free 0808 800 6000.

Hope this helps.

Kind regards,
Jo, Facilitator

Guest user
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Re: Knowledge is a dangerous thing

Have just read article in the Mail about mamograms, for and against. One professor says that although he was instrumental in setting up the scheme he now thinks it does more harm than good ,. many women being worried unnecessarily and having unnessary surgery on canncers that wouldnt progress On the other hand another doctor says he believes in it and it has saved people ! He says 70% of cases only have lumpectomies, naturally i am one of the other who have the full op. Told on Monday that two areas of DCIS need mastectomy, had come round to the idea but this article has thrown everything up in the air again.

Guest user
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Re: Knowledge is a dangerous thing

hi i have just had second wle as Dr had not got clearence of 5mm that he likes, dx with grade 2 3 out 17 nodes infected. Had mamagrams ultrascans and biopsy last year and told every thing ok found a dimple on skin at the end of august dx at the begin of Sept like you was in a state with having the lump for so long but find i just read and listen to information as i needed and think that i will get through all this one step at a time it does get easier try find something to plan ahead we are going to re dec the whole of the house so i am busy picking paint material and all the trimmings. i start chemo in a fornight and then i will have rads and the hormos.
Poppet

Guest user
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Re: Knowledge is a dangerous thing

Just been for another biopsy on the second patch of DCIS, small area initially 8mm
first area 15-18mm depending on which doc I talk to. I say its DCIS Im assuming it is, got to wait till Mon for results. Still dont want mastectomy, but think Ill be talked into it.

Kindensurprise
Member

Re: Knowledge is a dangerous thing

Hi Horsemad

I would add the good advice that I had when I first started posting here; don't read too far ahead on these forums, just the bit you are dealing with now. It's too much to take in. The language is unfamiliar, and you can worry about stuff that you will not have to go through. Find out what your treatment plan is, and break it down in to stages, at least that's how a lot of us find we can cope.

I found my own lump, had WLE and node sampling, my tumour was 3.1cm with widespread DCIS and had gone to 5 out of 7 nodes. I have just finished chemo and will now start looking at the rads boards, to have a manageable amount of information at a time.

Good luck and keep posting, I have found that it really helps because the people on here understand.

Kinden
x

ForumMember
Member

Re: Knowledge is a dangerous thing

Hi Horsemad,

I've answered your other threads a few times so I know you are in a 'bad place' at the moment. I was never ill either before I had breast cancer and at 44 it came as a complete shock to me too. There was no family history, I don't smoke or drink etc.....I certainly didn't have breast cancer in my list of worries for the future.

So, when you get caught in the breast cancer system so to speak, it's all very new obviously. I imagined like you seem to, that it was more of an exact science. You find a lump, they know what it is....have the op and treatment....carry on with life. But, it's a lot more complex than that......cancer is a lot cleverer than you think. It often doesn't show up on scans etc because in early stages, it mimics ordinary breast tissue, hence when the op is done it's only at that stage that doctors really know what they are dealing with.

One of my doctors said that the actual breast examination by hand is the best indicator if something is going on........if it feels different etc. And that most breast cancer cases come from the woman herself because she notices that something isn't right. As I explained before, mammograms and ultrasounds sometimes don't pick up cancer....that's what happened in my case. My breast felt different.....thickened tissue but nothing showed up in the usual tests but luckily for me, my doctor did a core biopsy and the cancer was found. They were as amazed as me because they really felt there was nothing wrong...just a natural change through age.

So, I come back to my point of it not being an exact science. there are different kinds of breast cancer...different treatments....and different outcomes. Try not to start to look at statistics because they are just a general rule so cannot be applied directly to you.

My advice is......try and take each day as it comes.........don't let your mind go into overdrive.......trust that the doctors will take the best decisions for you.....keep talking to us on here because we have all been there and come through it.

Sheana x

Sam_BCC
Member

Re: Knowledge is a dangerous thing

Hi Horsemad

Welcome to the Breast Cancer Care forums. I am sure you will get lots of help and advice from the many informed users of this site.

You may find BCC's resource pack helpful, it has been designed for those newly diagnosed. The pack is free of charge as are all our publications. If you would like a copy just follow the link below:
http://www.breastcancercare.org.uk//content.php?page_id=7514

The link for the publication Misha mentioned above is http://www.breastcancercare.org.uk//docs/your_op_and_recovery_07_web_0.pdf

I hope this is of some help to you.

Kind regards

Sam
BCC Facilitator

Guest user
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Re: Knowledge is a dangerous thing

Thanks Misha. Have to see surgeon consultant next Monday, 6th Oct. but been told by Breast Doc that mastectomy is the treatment. I am going to ask for further investigations now that I know the mammo isnt reliable although sometimes ignorance is bliss. Been awake all night yet again. You ladies on here are so brave and it helps that someone has gone through it before and knows the pitfalls etc.

Guest user
Not applicable

Re: Knowledge is a dangerous thing

Hi Horsemad,

You're in the worse place at the moment. The shock of the dx, uncertainty about treatment, blind fear are all completely normal. The waiting is so hard - things will get better as you get back in control.

It is surprising (shocking) how hit & miss the methods of diagnosis are in general. My DCIS was picked up by mammogram but the tumour only by ultrasound. Another area of DCIS only showed on MRI scan. The most accurate analysis comes after the operation when whatever tissue is removed is checked in detail. What op are you having? Long to wait?

I too had never been ill before bc. It seemed incomprehensible that the cancer did not make me feel unwell at all - it is the treatments that floored me. Hopefully yours has been found early which if course gives the best chance of treatment

I found the whole hospital experience overwhelming. There is a good booklet on this site under publications "Your Operation and Recovery" to give you some info on what will happen.

Best Wishes
Misha

Guest user
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Knowledge is a dangerous thing

Just been diagnosed and posted previously. However having been trawling this site for the last few days I am getting more despondent.! From being told I had DCIS in two places I am now begin ning to wonder what else is there that hasnt been picked up on the mammogram. Seems as if some cancers dont show up ? Also I had ultrasound on my call back and the DCIs wasnt picked up on this even though they knew where to look. Still feel like been hit my a brick and cant believe it. I expect everyoen was the same. I have been very very lucky in my life and never been ill as such so unfortunately now I am I am in a total funk about it