This post follows my previous post about Sewing a gown for breast cancer surgery
Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor.
The initial diagnosis
A couple of months ago, in October 2021, I found a lump in my right breast. It felt like a large grape under the skin and was movable when pressed. I had had a mammogram five months prior, so this seemed to have been a hasty development. I wasn't too concerned, but I booked an appointment with my GP straight away. She thought it was probably just a cyst and referred me to a local radiological screening breast clinic for an ultrasound. I mentioned the lump to my friend on our usual Monday walk and we agreed that I'd be fine and joked that I just didn't have the time or space in my life for breast cancer. A few days after finding the lump, I was at the clinic ready to be told it was all ok.
As expected, the ultrasound showed that the lump I'd found in the right breast was indeed a cyst. The sonographer then checked the left breast as is routine in these examinations. She seemed to be looking for a long time at one area and said that there was a region of 'altered texture' in the left breast. She was finding it difficult to see the area properly as my breast tissue is very dense. It was recommended that I have an immediate mammogram and some biopsies to see what was what.
If you are reading this and have been told you have dense breasts, then it is likely that you should have regular screening ultrasounds as well as, or instead of mammograms. It is difficult to see cancer in dense breasts on a mammogram alone. Breasts usually lose density as women age, which is partly why mammograms are not routinely offered to younger women. However, many older women also have dense breasts, so it is worth asking if you have them and asking for additional screening if necessary. I wish I had done so.
The mammogram and biopsies were done later the same day. The biopsies involved having an ultrasound to pinpoint the exact areas, then a local anaesthetic was given and a core biopsy punch, that sounds and feels like a staple gun, takes a sample of tissue. It is not terribly pleasant to say the least. I had around 15 core biopsies (and several local anaesthetic injections) in two separate areas of the left breast. I then had more anaesthetic and a fine needle aspiration (FNA) of the lymph nodes in my left underarm. The FNA was much better than the core biopsies.
By this time, I was more concerned that there was a problem. I waited over the weekend and rang the GP the next Monday. They said there might be some results later that day. I heard nothing and rang again about 4.30. The receptionist said she would put me straight through to the doctor for the results. I was on hold for a while. The longer I waited, the more I expected bad news. Finally my doctor came on the phone. She said I had breast cancer. She told me briefly what the biopsy had shown and said they were still waiting on the lymph node results. I started to break down. I said I would see the doctor the next day. I put down the phone. I was home alone. The shock was immense.
Following diagnosis
The initial diagnosis showed that I had invasive, lobular breast cancer in one breast which was present in both areas that had been biopsied. The cancer was positive for oestrogen and progesterone, which meant that hormone treatment, such as tamoxifen (which blocks oestrogen) would be recommended. The lymph nodes were shown to be negative for cancer cells at that stage.
I was referred to my local hospital in Perth for an appointment with a breast surgeon. The referral stated that my diagnosis put me into Category 1, meaning that I should be seen within 30 days of diagnosis, but it was recommended that I should be seen within two weeks. I had cancelled my private hospital insurance last year because I never get sick (!) so I am being seen in the public system. This means that treatment is free, but waiting times are longer. I was assured that waiting would not be an issue for 'more urgent' cases such as mine.
Unfortunately this was not really the case. It took 10 days from my diagnosis to even get the appointment. During this worrying time I had phoned the hospital and the GP several times and written to the Consumer Engagement team at the hospital with my concerns about how long it was taking. Still I waited. Finally the appointment was set for 2 December, 31 days from diagnosis. That month of waiting was excruciating and exhausting. I had legal appointments for my ongoing divorce settlement, which wasn't helping. My stress levels were very high and I had to stop working.
Fortunately my friends and family were extremely supportive. Walks and coffee meet ups were arranged and somehow the time passed.
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| In Kings Park with Sue of Fadanista (photo taken by @sewblooms). I'm wearing modified Hudson pants in silk and a Grainline Archer shirt in linen. |
I decided to be open with everyone about the whole issue and I didn't mind if friends told other friends. I actually found it way better if people already knew about my diagnosis when I saw them, rather than having to tell the story over and over. As the time passes, it seems to be getting harder to say 'I've been diagnosed with breast cancer', but easier to discuss the details and treatment plan. I've found myself saying no to gatherings with lots of people as it feels a bit overwhelming. I'm mostly spending time with family and close friends who know me well and who I can relax with. I'm also sewing and gently reading about breast cancer. I am being very careful to stick to reputable websites and not get sucked down rabbitholes of poorly researched information, which is misleading at best and terrifying and dangerous at worst. I want to know what my options might be for treatment and have some background information for possible decisions I might need to make.
A good friend put me on to the Reclaim your Curves website and Facebook group about breast reconstruction, which has been incredibly helpful. However, if you are thinking of joining a group like this, I would recommend treading slowly and carefully as the photos can be very confronting at first. I got quite tearful when I first saw photos of mastectomies. But I'm fine to look at them now. It has also been very positive to see the amazing results that can be achieved with reconstruction and read the stories of recovery. The group is very supportive and no question is too weird or silly, which is fantastic.
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