Delaying DCIS treatment

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Hello, I’m writing on behalf of my wife. We learned just before Christmas that she has DCIS, graded between II and III. This followed a routine screening.

I know we should feel glad it’s been found early, but she’s perfectly fit and well and finds it difficult to accept that suddenly she’s in the NHS machine and expected to undergo surgery. We were told the options are either wide local excision with radiotherapy, or mastectomy with probably no need for radiotherapy. Chemotherapy is not on the agenda, so far.

The really difficult bit is that she was on the point of accepting a new job when this happened, after several months job searching. She decided to tell the employer, who (much to their credit) said the offer is still open.

The issue is timing. Abandon the new job? Start it and immediately go on sick leave? Or get the job established first and leave the treatment for a few months?

Friends say ‘you must put your health first’, but having a job is part of being healthy - at least we feel it is, especially at 58 after being made redundant. Turning it down might do more damage to her well-being than a few months delay in treating DCIS.

It would be good to hear about other experiences of delaying treatment at this stage.

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Hi DiJon,

I am so very sorry to hear your news and hope that I can give you a quick picture of my experience.

I had just turned 50 (2009) and got called to my first routine screening. I went for the screening not giving it another thought until I received my recall letter. Unfortunately, mine was very widespread and extensive and my only option was to have a mastectomy as my surgeon thought there would be some invasive cancer mixed in with the dcis - this can sometimes be the case. I just wanted it all gone so went along with the surgeon’s recommendation. I had immediate diep recon and was back to work within 10 weeks - I am a nurse, so a very demanding job and because of the mx did not require chemo, rads or hormone treatment.
A friend’s mum had suffered herself with dcis and my friend and her sister were on an annual screening programme. My friend’s sister was diagnosed 8 months before me but didn’t want to contemplate any type of surgery - she researched it all and was also very well informed of the potential risks. After a thorough consultation with her consultant, she decided against any type of surgery (against advice) and went on tamoxifen. Apparently 6 months after starting this, some of her dcis had begun to disappear. Her Consultant was amazed at both her attitude and her body’s reaction to the tamoxifen. I know that having dcis is very frightening, however if your Consultant is convinced that, if it is “ONLY DCIS” and that there is no invasive cancer, then giving her and you time to think through your options would be a sensible thing. If your consultant thinks that there may be invasive disease, then action needs to be taken sooner rather than later. This means that you and your wife need to go back and have this conversation with her consultant and see just what the team looking after your wife advise. All “positive results” will have been discussed by a multi disciplinary team and they will have decided what the best pathway to go down should be, therefore have the conversation, inform your consultant of your situation and be advised by him/her. I would also contact the breast care nurse assigned to support you and speak to her and tell her of the situation. You can both then make the right decision for your wife’s health and situation.

I do hope that this has been of some help, please feel free to pm me if you want any more advice and please let us know how she gets on.

Regards,
Marjay

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Hi DiJon,
So sorry to hear of your current news. It is such a shock, isn’t it?
I had DCIS but they needed three attempts to get clear margins by offering a mastectomy after two previous ops.
After first lumpectomy it was found that DCIS was far more extensive than scan had shown and more severe from original biopsy!
So you may have to contend with that scenario…

However, after second op in November 2009 I had three months space before final mx! Firstly I wanted Xmas without any pain but then I got ill so op was delayed for another month!
Surgeon was quite ok about this space but wanted it to be done before a certain date because of NHS guidelines, not my health!!!

I’ve given you an insight into my two conflicting views but are you sure your wife could happily start her new job whilst waiting for her lumpectomy/mastectomy after diagnosis?
The waiting and worrying about all the ‘what ifs…’ is just so horrendous and there is no quality of life then!

So, my advice is go for the mx as soon as possible and recover properly where you can be assured of a good quality of life!
Cancer is too scary to be kept waiting…

This is only my personal view.

Good luck to you both from Welsh girl

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I went through exactly the same. I found research that said it 'may not be necessary to have a mastectomy. I had grade 3 DCIS in October 2009 after a routine mammogram. I ran 15k per week, highly paid job (freelance, so no money if I didn’t work and OH just given up work to do a degree), three kids etc and I felt OK. I read of the stories of ‘over diagnosis’ of DCIS with surgeons too ready to operate. When I researched more, it was clear that none of the journalists distinguished between the ‘stages’, and it is the case that some hospitals recommend mastectomies for grade 2 - which one could argue may not need it (but each case is unique and your wife’s team will have the latest guidelines that they are following, which take account of the latest findings, based on clinical truths). My surgeon explained all this, but didn’t push me - and indeed, the guidelines mean he shouldn’t.

I had the mastectomy and immediate LDFlap reconstruction in November 2009, with no chemo or radiotherapy and was told ‘that’s the end of it’ and was back at work in 6 weeks.

In June 2010, I found a tiny pea-sized lump in breast and went to GP. He said it was nothing. By October 2010 it seemed to have grown. The short version is that I got myself back to the clinic and was diagnosed with Stage 2, grade 3 breast cancer (two tumours - 1 tiny and 1 of 2cms) in the reconstructed breast.

I’m on my second chemo now and have 6 more to go, more surgery (will lose the reconstruction), the radiotherapy and then a few years of injections.

The ‘theories’ (as this is all it can be at the moment) is that with such widespread DCIS, there was actually a tiny bit of invasive cancer already there (as Marjay refers to in her response) which got ‘left behind’ OR that a bit of DCIS tissue was left behind and grew into two pieces of invasive cancer. I like the first option as it would be less aggressive.

Anyway, the point is that I would be in a much worse state now if I hadn’t had the surgery as my DCIS was clearly very volatile. Cancer is often a journey, but luckily the advice and outcomes (even if it doesn’t go quite to plan as in my and Welsh Girls examples) are very very good at DCIS or even primary cancer stage.

So, only your wife can decide, but she must have all the info from her team - and don’t forget, she has a right to a second opinion. If you can’t be demanding now, when can you be?

There is no right way…and unfortunately we all react differently and the pathology of each person’s cancer/DCIS is different.

Also, there is no need for your wife to ‘turn down’ any job. If there is any ‘turning down’ to do, leave it to the company who offered her the job. Just be clear and honest with them as she has already been - and don’t over-promise on when she can be ready to get back to work (I went back too soon). I had no rights to keep my job, but both times, the companies I was freelancing for came up with ways to help me; I’d only been working for one for 3 months and the other for 2 months; if she is right for the job they can get someone in to cover her role until she is ready. (PS: I’m 53).

I appreciate how difficult it is, but the most difficult bit is accepting that yes, she will have to be part of the NHS machine for a bit, but this doesn’t change her. Once you and she have made the decision, it is easier to feel you are driving the machine.

Good luck over this difficult time.
Annie

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There is no good time for a diagnosis of any form of breast cancer, but how sad that your wife had hers along with the job offer. I would suggest a talking to the people at your unit; if your wife’s DCIS is low grade they might say a wait of a few months won’t make much difference. If they recommend immediate treatment, you could ask the new employers if they would consider a delay in taking up the position.

I had a DCIS two years ago, at 61, and the recommended treatment was lumpectomy (WLE) and radiotherapy. The recommendations vary because, as others have said, grade and size are factors.

Because the sugery happened to take place at the end of my summer holiday, I was at work the following Monday, just going home early a couple of times when we had a quiet spell. I worked at least half way through the radiotherapy before taking a couple of weeks off. I found that getting a lift to work rather than having to drive made a difference.

I was fortunate in having very few side effects other than tiredness and in being able to make some arrangements to my schedule, such as not starting a new class immediately. While I was still working, I had my radiotherapy at the end of the working day; some people have theirs before work. Part of my work is done from home, which helped, and this might be another avenue to pursue.

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Thanks to everyone who has commented. it is really helpful to hear of others’ experiences although I confess I am still struggling to weigh up the options when the outcomes seem to vary so much.
We go back to see the consultant tomorrow. Fingers crossed that I still have some choice about the timing and yes Annie22, I can see that it’s probably easier once a decision has been made. Thanks for sharing your story and good luck with your own treatment.
Dijonmustard

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I was also diagnosed with low grade DCIS following my first routine screening, if it helps I had the wire localisation and WLE, my results meant I needed a second op as no clear margins on 2 sides, but before I had this my hubby had a heart op scheduled & had been since before I was picked up for DCIS. My surgeon worked round me, and delayed it for a month to allow hubby not to have his op delayed. She advised it is non-invasive and delaying a little while would not be an issue.
Anyway 2nd op was fine I just now need to get through RT in early planning stage, again they said it didn’t need to be rushed as DCIS removed with good margins, this part is to reduce possibility of it coming back.

Best wishes to your wife.