From DCIS to secondaries in 3 years?

Having read Sunnybear’s terrible news that her mom has developed secondaries after having DCIS only three years ago, I am filled with worry at the thought that monitoring in the NHS just isn’t good enough. They plan to give me a mammogram in two years time which will be two and a half years from first dx with DCIS. If Sunnybear’s mom has got to the stage of having secondaries in her brain and bones after three years then surely this kind of monitoring just isn’t sufficient to protect us?

Hi Suzanne

As I understand it, scanning/monitoring (apart from mammograms and ‘poke and grope’) is not routine unless someone presents with symptoms.

The arguments for this approach, again as I understand it, are that very small tumours will not be picked up by scans, that a scan is really only a ‘snapshot’ of your situation on a given date and is not a pemanent guarantee that all is well and finally, early detection of secondaries does not significantly affect outcome.

I’m not sure I agree (from personal experience) with this reasoning, but this seems to be the logic on which current policy is based.

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As someone who has been treated for DCIS, I am going to play devil’s advocate here. The vast majority of women with DCIS will be cured with their current treatment and those who do have a recurrence will have a new primary, not secondary cancer. I know this is of no use or comfort to Sunnybear’s mother and I think it is dreadful that she has ended up with such an aggressive cancer. However, if the NHS was to scan all women with DCIS because a small minority may develop secondaries would be uneconomical and unethical as scans would not be available to those who are more likely to develop secondaries. Also, Like Bahons says, a scan only gives a indication of what is going on at that exact moment, so if a cancer is aggressive, you could scan one month and there would be nothing detectable and another month down the line, there could be a big tumour. Therefore, it would mean scanning on a weekly or monthly basis which then would be harmful to the patient and even if secondaries were found early, there is no evidence to suggest that survival rates improve because of this. Unfortunately, there is no one policy of monitioring that suits everyone and we are stuck with the wait and see concept.

Hi Cathy

Are scans available to those more likely to develop secondaries?

I thought they were only carried out once someone had symptoms…

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Hi Bahons

As far as I am aware, depending on your stage and grade of cancer, the doctors may decide to give you a CT/MRI scan is they are in any doubt whether the cancer has spread, even if there are no definite symptoms. So someone who has a large tumour with a high grade, may well need ct scan at the treatment planning stage.

Hi Cathy

I had a bone and liver scan on diagnosis 4 and a half years ago for exactly that purpose. I know I have/had a high risk of recurrence and yet no further scans were ever offered. The oncologist said to make an appointment with her if I developed ‘anything that didn’t clear up in about a fortnight’. I can’t say I found that particularly reassuring!

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Cathy is right…the vast majority of people with DCIS will make a full recovery. I am really sorry to hear about your mum Sunnybear…an example of how unpredictable cancer can be…but certainly not generally the case. I am very sorry that before her diagnosis your mum was in pain for such a long time. I think this highlights how importanmt it is for everyone who has had diagnosis of primary breast cancer to be aware of symptoms which may indicate recurrence, and also how important it is that GPs should be vigilant.

I don’t think routine scanning in the absence of symptoms helps anyone. Its a hard fact to hang on to in any case that slightly earlier detection of secondary breast cancer which an early sca might suggest, will not bring any improvement in length of life. (there is a debate to be had though over the earlier use of biophosphonates toimprove quality fo life in those with bone mets.)

I hope you and your mum are getting as much support as you can Sunnybear.

Jane

I was first diagnosed with DCIS in 1996, the mastectomy showed v. small tumour which was fully cleared. I had chemo and radio. Since then I have had local re-occurrence and lymph node clearance (can’t remember date!), second primary in other breast (2002) and secondaries in bones, liver (2007) and meninges (2008). So I am not complacent about an initial DCIS diagnosis. Fortunately for me my cancers have been slow to progress.

I do wonder about evidence on likely progression from DCIS to further cancer. Given the paucity of stats on progression to secondaries I wonder if the stats on progression from DCIS are any better? I don’t know, I have not done any investigation, I just know what happened to me…

Now having gone through n number of scans I tend to agree that symptoms (pain, nausea, weight-loss in particular) are a good alert to something going wrong wrt secondaries, and should not be ignored. With primaries I think it is more difficult, and that a well timed MRI scan was important in the dx of my second primary - prompted by small lump.

It’a a bum deal having the anxiety of worrying how much one should push for further monitoring (scans), on top of worrying about the illness itself. I have been grateful for excellent medics who have not stinted on arranging scans and offering appointments to talk over worries.

SuzanneP, I am very sorry if I have filled you with worry. I don’t really know much about any of this or how BC works, however I do believe Mum’s oncologist is extermely surprised with the findings of her secondaries after DCIS and it is very rare for it to have spread like this.
Mum had so many tests, scans, biopsies and operations on her knee before any of this was found and it’s only been picked up now. Her regular Mamograms were also all clear. I don’t yet know all the details of Mum’s cancer and will be making sure I find out why this has happened.

The one thing we are frustrated about is that about 6 months ago Mum lost some of the use of her right hand and her speech became quite slurred and when she went to the doctor she was sent away being told that it was probably nothing, just her age (she’s 61!). Surely knowing her history of breast cancer the GP should have taken this more seriously and we might have found the brain cancer sooner.

My sister and I are also now being referred for regular MRI scans by Mum’s oncologist as Mum’s sister and Mother both suffered and passed away with from disease. We were due to start regular screenings from the age of 35 (now 30 and 26) however due to Mum’s circumstances an MRI will pick up much more than a mamogram for us.

All I can advise is that you make a fuss about any little niggle you have and demand to be taken seriously!

Thanks again for all the support from everyone, it is so much appreciated.

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Sunnybear,

Don’t be concerned about worrying me …you have enough on your mind to worry about - besides I’m one of those people who prefer to know about the possibilities even if they are rare.

Your mom’s situation just seems to fly in the face of all you get told about DCIS. I know the truth is that the doctors don’t have a clue how long someone has had DCIS for and they don’t know whether or when it will become invasive which is another reason why I think people treated for DCIS should have regular follow up mammos or scans (and not just every 2 years). I just don’t understand how your mom’s regular scans and mammograms were clear.

It is a terrible shame that your mom’s GP was so dismissive of her symptoms being down to her age. They clearly weren’t. Many people are brought up to respect GPs and accept what their docs say to them and it often seems that those who shout the loudest are the ones to get the appropriate treatment. I am just so sorry that your mom has developed brain cancer and that the diagnosis wasn’t made earlier.

I’m glad you are being referred for an MRI and, with your family history, make sure you kick up a fuss too if you feel anything is even slightly wrong.

Suze
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