Ductal carcinoma in situ (DCIS) has been seen as ‘pre-cancerous’ and often treated with mastectomy. Now there is debate among breast specialists on whether it should even be called ‘pre-cancerous’ because it is simply changes in the breast that may never progress to actual cancer or cause a problem in a woman’s lifetime. But no-one knows which ones will or will not progress. Sadly, women with this diagnosis have not been told the facts in the past and even today many will not be given the information they need in order to make an informed choice about treatment (and immediately becoming a cancer patient) or no treatment and active monitoring. Many will not have heard about the possibility that biopsies or surgery may prompt a change in cells that would otherwise lie dormant. Many will not realise that there is no need to rush into a decision.
The following personal story of DCIS – an anecdotal case study of one woman’s experience of screening, diagnosis and subsequent disease development – is posted with permission of the author in the hope it may be of use to some women.
“My breast cancer, diagnosed by mammography screening in November 2012, has recently progressed to stage 4, with multiple secondary tumours in both lungs, a lytic lesion on the sternum and thoracic lymph node involvement. Here is a potted history- an anecdotal case study of one woman’s experience of screening, diagnosis and subsequent disease development.
From age 50 I had participated in the UK’s triennial BC screening programme and, at age 67, went along for what was likely to be my last screening mammogram. To my surprise, I was recalled for assessment and diagnosis. This was a particularly turbulent time in my life. My daughter, her husband and three children had recently moved to Saudi Arabia for an indefinite period. In the wake of their leaving the UK, my husband and I were in the process of moving to the South West, to be closer to my son and his family (he had two little girls), having lived and worked in the South East most of our married life. We retained a small house in that area too, as we had so many friends and commitments there. I still wonder whether the emotional and physical upheaval of all this change might have temporarily or permanently altered the tissue of my breast. I shall never know.
The half day assessment centre, including more mammograms, ultrasound scan, 14 core needle biopsy samples and vacuum assisted biopsy, was the worst experience of my life. The radiologist did not like me asking questions (trainee observers were present). I was utterly patronised, my questions were left unanswered, I had the feeling that I was simply there to help the centre reach its target for screen-detected DCIS. My left breast was treated like dead meat. The radiologist was certain it would be removed shortly and his job was simply to provide the evidence to justify that decision. By the end of the session, a large area of the breast was bruised black. The nurses struggled to stop the bleeding. From that day on, the breast was painful and the vascularity around it began to change.
Two weeks later, I attended again to receive the results – high grade DCIS throughout 8cms of breast tissue and recommendation of immediate mastectomy.
Another two weeks later, at a leading London teaching Hospital, a leading breast surgeon explained the concept of Lead Time Bias to me. I also contacted Hazel Thornton, whose book, “Testing Treatments” I happened to be reading at that time. Hazel kindly introduced me to a relevant Google Group and supplied me with extensive published literature on screening and on DCIS, to help me reach an informed decision. The upshot was that I chose active monitoring rather than mastectomy and so kept my breast for another three years, during which time, apart from the pain in my breast, I enjoyed good health. During that time, I attended 6-monthly monitoring consultations with a breast surgeon in the South West (since we now lived in the south west of England). At first everyone treated me as if I was difficult, obstinate, perverse or mad but over the three years, a healthy mutual respect developed between me and the surgeon, who once said, talking about over-diagnosis “We know we remove some breasts unnecessarily. We just don’t know which ones.” That’s quite a dilemma! I didn’t envy him his job!
However, by late 2015, I had symptoms of breast cancer, which resulted in a mastectomy in November of that year. The pathology report identified 3 foci of invasive cancer in the breast and these coincided exactly with the sites of the brutal biopsy sampling, 3 years earlier. I am convinced that Michael Baum is correct in asserting that the progression of early or pre-cancerous states may be accelerated if the cells are “perturbed”. The report also stated that there were micro-deposits in one lymph node. The cancer was Her2 positive.
Just my luck – although at first it seemed the surgery had gone well, 3 days later infection developed and then a sudden and massive haemorrhage into the wound, which was life-threatening. I was rushed to A & E by ambulance and stabilised. I was then in and out of hospital for a period of three weeks, being drained, having a blood transfusion and ultimately further emergency surgery to clean up the wound and remove almost 1 litre of stale blood and clots from the surgery site. Once I had recovered and healed, I was referred to oncology for adjuvant chemotherapy, which I declined. There were two reasons for my decision. Firstly, it seemed the number of rounds of chemotherapy required, for its own benefit and in order to qualify for Trastuzumab (the expensive anti-Herceptin drug) was negotiable and this undermined my confidence in the professional advice I was being given. Secondly, on pressing for statistical information, I was advised that the chemotherapy regime would only increase my 10-year breast cancer survival chance from 2/3 to 3/4. Now 70 years old, I was less concerned about slightly increasing my chances of being in good health at 80 than I was about avoiding chemotherapy’s detrimental health impact right then, when I was enjoying an active, worthwhile and interesting life.
Since 2015, I have enjoyed 4 more years of good health. During 2019, I developed increasing pain in my left arm, probably due to an enlarged lymph node pressing on the main nerve. There were other symptoms too. A CT scan confirmed my fears and oncology recommended a 12-week course of weekly Paclitaxel infusions, coupled with ongoing 3-weekly sub-cutaneous injections of Trastuzumab to target the Her2 positive cancer. After 9 weeks the programme was abruptly stopped because of severe peripheral neuropathy and loss of balance, due to damaged proprioceptors. My hands, feet, nose and mouth are numb and I cannot walk without support, for fear of falling. Nor can I drive, as my feet slide off the pedals. Any reversal of these side effects is likely to be very slow, if indeed it happens at all. The good news is that the tumours have regressed in terms both of size and activity.
My message, after some reflection, is this. Firstly, I have no regrets, except that I went for screening in the first place. Delaying treatments, both surgical and chemotherapy has extended the time during which the cancer has not been a problem in my life. During those 7 years, I have had a wonderful retirement and pursued many interests. My grandchildren have grown from toddlers and pre-schoolers to middle childhood and teenagers. The oncologist hopes to extend my life for a further 2-3 years. So, I might make it to 10-year survival anyway. Secondly, I am happy to share my experiences with any woman facing decisions about her own breast health. Thirdly, I remain convinced that screening should be discontinued and replaced with a comprehensive education programme, so that all women become breast aware and understand that they should report any changes in their breast(s) immediately. Only in that way can resources be directed to those who need treatment and away from the worried well. An added benefit would be saving a great deal of unnecessary anxiety among well women. How to achieve this is the big problem, since no government will withdraw mammography screening, until and unless there is a radical re-education of the entire population about the balance of benefits and harms of screening – no easy task!”