Since it is October, also known as Breast Cancer Awareness Month, I would like to share the story of my friend Alexandra from Sweden:
~ I started feeling something lumpy in my left breast around the time I stopped breastfeeding, so I guess I did not seriously believe it was cancer, but my mind was not at ease. I was 27 at the time and googling online, I looked at the statistics which did a lot to calm me down. The average age of women with breast cancer is 64, less than 5% are under 40 and about 1% are under 30. Phew…! I had pain in my breast too, and read lots that said ‘pain is not a sign of cancer’ which also calmed me down. However, all this made me wait over 6 months to get it checked. By then the lumps had not disappeared and I was so sure I could feel something. I felt I had to go and get it checked out.
Finally in July last year I went to the doctor. At the GP’s office I met a young doctor who told me ‘it’s most likely nothing’, but he could also feel the two lumps I felt and referred me to have a mammogram. He was very reassuring, telling me ‘it’s so unlikely that this is cancer, so don’t worry.’
A few weeks later I had a mammogram. Right after that they wanted to complement it with an ultrasound and a fine-needle biopsy, as they saw something slightly suspicious. The doctor told me ‘it’s just to be really really sure.’ ‘It looks fine.’ ‘Probably nothing.’ ‘Everything looks normal.’
A week later I found out that they found malignant cells, so it was something. The news was given by the young GP I had met first at the health clinic. I could tell he was shaken and very surprised. I was in shock and all I could think of was: my daughter will become an orphan. What will happen to her when I die? [Alexandra is a single mom – red.] When he offered to prescribe pills to help me calm down and also sleeping tablets, I happily took them.
Next visit was at the surgical department at the hospital, the surgeon there told me still, that it was quite possibly “nothing” once they’ve removed the “something”. Breast cancer is staged from stage 0-4 where 0 is pre-cancer and 4 is metastatic, incurable cancer. He said it is probably just stage 0, “in-situ”, which means it could develop into cancer if untreated. But once removed I would not need chemo/radiotherapy and my life-expectancy was actually better than women who had never had it. When I asked him how that could be, he said it was because I was attentive to my body and clearly someone who seeks medical attention when something felt wrong, therefor I was more likely to live longer than the average women. Alright, fair enough, I thought.
But my gut-feeling told me they were missing something.
He told me that there was a new kind of operation where they remove the entire breast and straight after put an implant in, a direct-reconstruction. He said the hospital had been given criticism for not doing this new procedure as often as their colleagues in Stockholm, but they were going to perform it on me. No risks were told, I was recommended that this was my best medical option. However they would book me in for a core-biopsy where they take a larger sample, to be sure of the diagnose before surgery. He was excited about the operation, and said it was because of my age that they would give me this as an “extra” procedure. Had I been an older lady they would have not bothered, but just given me a “standard” mastectomy.
I felt very sad for older women meeting this surgeon, and also quite offended as a young woman. I never once said that the esthetic result was what mattered, I did not specifically ask for a much more complicated and risky operation, which a direct-reconstruction is.
Take it from me who has had a direct-reconstruction done, but also later had a “standard” mastectomy on my right side: There is no comparison and women must be told that it is a huge difference in the two procedures. Not everyone is prepared to go through an immense amount of pain in order to have breasts. No woman wants her breasts removed, but the alternative is not always better. It’s not like we would all do “anything” to have nice looking boobs, especially not when you are fearing for your life as you are battling cancer.
I went in for the core-biopsy a few weeks before my operation. The doctor did not take samples from my lumps. I thought this was weird, why did he puncture the other side of my breast…? But I trusted them still, thought they knew what they were doing. Results came back: “in-situ” and stage 0 breast cancer.
I still did not feel at ease, as I was so sure they had not punctured the actual lumps, the needle was nowhere near! I told this to my doctor, another doctor, the nurse, anyone that would listen really, but nobody took any notion.
3 weeks after my first operation where they did the mastectomy+ direct-reconstruction I was given the pathology-report where they had assessed the removed tissue. The two lumps I had felt had been missed during the biopsies, they were aggressive invasive cancer. Around them I had a large area of “in-situ” tumor. I had an area of 6 by 9 cm “in-situ” plus 2 invasive (real cancer) tumors of 1 and 2,5 cm, along with 5 lymph nodes that were infected.
A blind person could have punctured my breast and got “in-situ”. All of it was covered by it, however the 2 specific lumps I searched for in the first place, were missed.
Stage 3 breast cancer, not stage 0. Vast difference.
I was now recommended to have the implant removed. It had not healed properly and since I needed to start chemo soon and was also going to receive radiotherapy, it was not safe to keep it in.
So I went through an incredible amount of extra pain for 4 weeks, for absolutely nothing, before removing the implant because they misdiagnosed me. Had they managed to puncture my lumps before surgery, they should have not recommended a direct-reconstruction. As my cancer was locally advanced, that would not be a safe option.
I started chemo and was then told that they needed me to have a third operation. The pathologist was not sure about the margins, they always want a few millimeter of healthy tissue in order to call the tumor “radically operated”. But I would have to wait until after chemo, as whilst under treatment it is not safe to operate, due to risk of infection and lower immune system.
By this stage I had just about had it with the surgeons at my hospital. I had no trust in them and started searching for other hospitals. I found one that had great reviews and a surgeon that seemed fantastic. I finished my 15 rounds of chemo and went to the other hospital, 3 hours by train away, and had my third and final operation there. I also asked them to remove my healthy breast.
The reason for that was not fear of new cancer, I knew there was no real health risk if I were to keep it. Developing breast cancer in the other breast could happen, but the risk is not that much higher than having breast cancer in the first place. And I don’t believe all healthy women should go removing their breasts just to be sure. We can’t go and remove all organs that could develop cancer.
The reason I wanted to have it removed was because of my experience from the first operation where I had to stay hospitalized for a week and I could barely move without morphine for 4 weeks. I would never put myself through anything similar again, so I knew I would never want a reconstruction for that reason. And what is the point of one breast? I’d rather just be flat, for esthetic and practical reasons.
I had this operation in April 2015, followed by 5 weeks of radiotherapy and now I will continue anti-hormonal treatment for another 10 years. I am happy with my decision and it is not as bad as I thought it would be, to not have any breasts. That is probably the least difficult thing in comparison to everything else. I wish the doctors at the beginning could have thought of that as a possibility, it would have saved me a lot of pain and operations. They were so eager to perform a direct-reconstruction, because they wanted to be like their colleagues in Stockholm. They did this at the expense of diagnosing me right, at the expense of listening to what I actually wanted myself, causing me physical and emotional pain that could have been avoided.
After all, it is my body, right? ~
Alexandra has filed several formal complaints, and the government is now investigating the hospital and we are waiting for their final decision. Her hope is that some changes are made to help other patients and ensuring we all receive proper, respectful and clinically correct care.
Alexandra is not asking for donations to charities. ‘My specific cause is to be involved in your own care. Do your research and don’t blindly trust doctors. We should not have to, but reality is we have to. Mistakes are made at all levels and it’s important to stay on top of your own health, as it could be a matter of life or death…’
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