After DCIS

Public Archive
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I’m a bit scared to even mention this topic as I know others with worse breast cancers and terminal conditions read all discussions and, although DCIS is trivial by comparison, I have days when I have worries about the future.

It seems like yesterday I was ft and healthy and knew nothing about breast cancer. Now I’ve had surgery and radiotherapy and its all over. But is it really?

In America patients have mammograms after surgery to make sure all the microcalcifications have disappeared yet I have been told that mammograms are twice the strength of a chest x-ray so shouldn’t be given out often. Sometimes I wonder whether there is anything else lurking or some small spot of invasive cancer that wasn’t picked up although I try hard not to have negative thoughts. At other times I feel like I’ve been through nothing and it was all a bad dream.

Is it normal to feel like this?

I have to see my doctor again in about a month but have no idea whether DCIS takes a long time to form or whether you can have an aggressive form that can recur very quickly. So, how do the doctors decide on an appropriate follow up plan?

What is the experience of others who have had DCIS in terms of follow ups?

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mammograms aren’t that great at picking up breast cancer, I had them after I found my lump and they were all clear. Higher grade DCIS is sometimes picked up because dead cells show up as microcalcifications but not the lower grade versions.

I had low grade DCIS plus a nearly 2 cm invasive ductal tumour. I’ve decided not to have mammograms as they didn’t pick up the cancer and I am still premenopausal. Breast tissue is denser in pre-menopausal women as I am and dense tissue doesn’t tend to show anything up.

Mole

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So what kind of follow up treatment are you having Mole?

(my DCIS was picked up on a routine mammo but if they aren’t great at picking up bc then why do they do them? Do the NHS do any other regular screening that will show it up? Or maybe I should get my private healthcare to cover follow ups?).

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I am having no follow up treatment. Routine mammograms are given because although they aren’t great there are a lot of women who get breast cancer, 44,000 a year, therefore despite the inadequacies of screening it picks up about 20% of these. Most cancers are found by women themselves. A review of screening a few years ago wasn’t able to come out strongly in favour of screening mammograms but they may be better than nothing if you don’t have dense breast tissue as I do.

Follow up visits haven’t been shown to make any difference to mortality either according to NICE guidelines. NICE seemed to think more resources should be deployed towards diagnosing primary breast cancer but doctors don’t like this and some patients seem to be reassured by follow up appointments even though they don’t have any clinical benefit. So having read the guidance I decided not to bother, if I find a lump I’ll have it investigated. If not I will continue as I am now. I’ve been spared visits to the breast clinic for the last five years and it’s a lot easier to work if you’re not going back and forth to hospital appointments all the time. Apparently you never see the same doctor twice as the doctors know it’s a waste of time so spend as little time on it as possible and the most junior staff do the follow up appointments which last about ten minutes if that.

Mole

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Anyone else had any experience of follow ups after DCIS?

Mole - I’m surprised you’ve decided not to have follow ups in view of having an invasive cancer too. Your anecdotal evidence about follow ups makes depressing reading though but I hope it isn’t the same all over the country.

What would a follow up appointment be like - is it just someone quickly examining your breast and asking how you are? I (perhaps rather stupidly) thought maybe some kind of regular scan to make sure anything untoward is picked up quickly at the very least.

Anyone any experience of follow ups under private healthcare schemes as I’ve got private cover so may switch to that if I will get better screening and follow up?

Also, my GP has suggested sending me for a bone density scan but I haven’t been back for her to refer me yet as I thought it might be automatically covered by my follow up at the hospital. Anyone advise whether these scans are given automatically as part of follow up?

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follow up is designed to find new primary cancers not to look for secondaries or to test bone density. follow up is described in the NICE guidelines Improving outcomes for breast cancer which was updated in 2002. I know some breast cancer charities are campaigning for it but the evidence for it being useful is not really there except in the sense of reassurance. I’m not reassured by it as I don’t think it will make any difference to my prognosis. Secondary breast cancer is not picked up until it shows symptoms so testing for it regularly would make no difference and if it’s found early, earlier treatment doesn’t affect your life expectancy. I have grade 1 cancer anyway which isn’t likely to spread so why waste time, invasive cancer or not if it’s going to get me it will and if it isn’t going to, it isn’t.

I don’t care. I don’t have any children to worry about so I can be as selfish as I like. Living a long time doesn’t appeal to me, my father is 88, thinks he’s 99 and is increasingly decrepit, not sure I want to prolong the agony too much.

Mole

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Hi Suzanne

I had WLE and radiotherapy for DCIS in February. I have had two follow up appointments since which were basically an oncologist doing a manual examination of my breasts. I am due to have a mammogramm in January, a year after initial diagnosis and then every two years afterwards. I can appreciate what Mole says about it being a waste of time in the sense that I have had two different registrars doing the follow up and as I check myself religiously, I don’t expect they would find anything I hadn’t detected already. I havent been offered any other type of scan simply because I probably dont need it as I am asymptomatic and have a good prognosis. However, I do find the appointments useful, mainly because of the information I receive. I go armed with loads of questions and use the time basically to find out as much as I can.

8

My experience of follow ups for DCIS is different. I was diagnosed at the end of 2002 with high grade, widespread but non invasive DCIS. After my mastectomy I had follow ups every six months when I was seen by my consultant (not a junior doctor), who examined not just my remaining breast, but looked for signs of secondary spread by feeling my liver, my abdomen, my spine and my neck. He also did tumour marker tests. When I complained of a grumbling liver he did a liver ultrasound and when I complained of any boney type pains I got a bone scan. My consultant was, I think, very vigilant.

However, despite this vigilance, and just two or three months after one of my follow up visits, I developed (almost overnight) two large new lumps in the breast on the other side to my first breast cancer. These turned out to be invasive DCIS - one 3cm lump and one 1cm lump. Neither were picked up on mammogram or on physical examination. I had surgery, chemo and radiotherapy for these and again the usual follow up. But, unfortuately, a couple of years later I developed secondaries.

So I guess cancer was always probably going to get me anyway. The routine follow ups, despite being thorough, carried out by the top man and carried out at regular intervals, still failed to stop the spread. If it is going to happen, it is going to happen.

Having said that, I do feel that, as a result of the monitoring, my secondaries were picked up earlier than they might have been. When first diagnosed, there were just a couple of hot spots on my ribs that showed up on a bone scan that had been ordered for a pain in my leg (which turned out NOT to be cancer at all). I actually had no symptoms of bone spread to the ribs. I know that the fact that my secondaries were picked up early will probably not make much difference to my prognosis, I just have to live with the knowledge longer, but I do feel that this early diagnosis has given me time to come to terms with my secondaries and prepare for what might come along as this disease progresses. For me, I would rather know what is going on than to be told, after becomming symptomatic, that I have widespread metastatic disease.

Sorry if this all sounds a bit scarey. Nobody with “just” DCIS expects to be told that they have secondaries a few years later and I am one of the very rare ones. But thought it might be worth sharing my experiences, for what they are worth.

Deirdre

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When I went to a focus group at Breakthrough Breast Cancer I put my point of view which was definitely at variance with everyone else there. We decided in my group that women should be able to have the degree of follow up they feel comfortable with. Personally that is zilch but everyone is different.

Mole

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Thank you everyone for your replies. It does sound like there are differing follow up regimes and, despite you having secondaries, Deirdre, I too would prefer to have had the level of follow up you had and more time to get be able to come to terms with the secondaries even if earlier diagnosis doesn’t help the prognosis.

Cathy - that’s an important point you’ve raised too about being able to ask questions.

Follow up shouldn’t all be just geared up to whether survival rates improve. It should also be about helping people to cope with future fears and giving them some semblance of peace of mind and a time when they can ask the professionals all sorts of questions that they may feel they can’t voice anywhere else. It should also be about not letting people feel abandoned after initial treatment has finished as the psychological impact of this disease is enormous.

Mole - I don’t have children either but I still want to know as soon as poss if I encounter any more problems in my breast. I understand what you mean though about living to be old as it is difficult to watch loved ones deteriorating in health as they age. Sometimes I think I wouldn’t like to be old and decrepit but when I consider the alternative I’m not sure that I want to die young either!

The best of health for as long as possible to all of us!

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Im quite happy to be abandoned, or in my case to abandon hospitals, I came out with more than i went in with as far as I am concerned (two wound infections) so the less I am there the better.

I also don’t think medical professionals are better equipped to answer my fears and questions than anyone else, in fact people who have gone through breast cancer seem infinitely better equipped to me than the consultants most of whom are male, and the nurses who are basically there because doctors don’t like communicating with their patients at least that is my completely unbiased view.

I think they are as glad to see the back of me as I am to see the back of them.

Mole

12

I have a high grade comedo necrosis DCIS and have just had a unilateral mastectomy and a DIEP reconstruction 3 weeks ago. The last path result show invasiveness of grade 1. I asked my consultant what future monitoring is there to ensure that there is no recurrence on the recontructed left breast. She said nothing, except clinical examination, when there is a lump. I am surprised becaused my DCIS did not manifest itself in the form of lump, there was no lump at all. However, my previous consultant (I transferred hospital) told me to have 6 monthly MRI. The current consultant only agreed to 1 MRI, 3 months post op, with a routine mammogram thereafter for the other breast. I am also confused as to how the future effective monitoring for DCIS is decided. Mammogram does not always pick up the microcalcification. MRI is more expensive than mammogram. It would be interesting how each doctor decides on what monitoring method and I supposed this is also governed by the budget each practice spends on each patient.

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I asked my BCN about MRI scans and she said it is no good having one unless there is someone trained in the use of it and also breast cancer! Otherwise the person scanning doesnt really know what they are looking for.

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Horsemad,

I would absolutely expect to get a person who is trained in the recognition of BC or at the very least trained in recognising what is normal and what is not. I’m sure the reason why MRIs aren’t given out as standard to BC patients is more to do with cost than anything else.

What kind of people operate the scanning equipment? Don’t tell me - it is probably the same bunch of young girls who gave me my radiotherapy. I would give them zero marks for friendliness, zero marks for their communication skills and zero marks for inspiring my confidence. I think the rooms would be better kitted out with at least one experienced radiographer for every newbie.

What chance do we have if the NHS don’t even put appropriately qualified people in positions instead of people who just read figures off a machine to make sure you are in the right position?