Supporting women whose lives have been touched by breast cancer

Invasive Lobular Cancer Diagnosis

by bl

I wasn’t the slightest bit worried or anxious going to the new cancer unit in our local hospital to have my new lump checked out. It was the 5th lump I’d had, all the rest had been cysts and the GP agreed with me that it seemed quite innocuous. Whilst I was filling in my details in the waiting room it crossed my mind that it was Friday 13th, but I’m not superstitious, and that it was the first time I had anything to put in the section asking if I had any family relatives who had breast cancer, as I had only discovered 2 years previously that my grandmother had died of breast cancer before I was born.

The consultant I saw agreed it was likely to be a fatty lump, but worth investigating whilst I was there. Even being called back into the mammogram room 3 times did not ring any alarm bells and it was a big surprise when the consultant said he was worried with my results, but I still expected him to say that they were just going to aspirate or do a biopsy to check. He explained the lump I’d been referred for was a benign fatty lump, but the mammogram and ultrasound showed a ‘lesion’ that worried him. It was a type that was unusual in a woman of my age he said (I was just coming up to 60) and more prevalent in pre-menopausal women. It wasn’t far from the original lump and in an area that showed many changes: lots of little cysts and this ‘lesion’, that he was pretty sure would prove positive, but needed a biopsy. The lymph nodes looked to be clear and the lesion was very small, about 0.6 cm on the mammogram. He was on holiday the following week, but didn’t want to delay and would like his colleague to conduct the biopsy. I could feel myself welling up. This couldn’t be happening to me. I didn’t have malignant lumps. I only had benign ones. I had registered that a woman in a suit holding a lot of leaflets was in the room with us, but still wasn’t sure who she was. It was the Breast Care Nurse (BCN).

After a short wait in the corridor I was called in to see the second consultant who examined me and looked at my results again. He explained that they grade suspicious mammogram and ultrasound results on a scale of 1 – 5 and mine was a grade 5, which meant he was 98% sure that it would be cancer and he would try and arrange a biopsy next week that would lead on to a lumpectomy and radiotherapy. The BCN took me back outside and asked me to wait whilst she organized my appointments. I was feeling a little shaky by this time and unsure of whether she meant me to wait in the main waiting area or the little area outside the consulting rooms. I asked a nurse sitting by the doors and when she heard I was waiting for a biopsy appointment she told me to wait by her. 2 other women joined me there; they were obviously mother and daughter and were also waiting to see the second consultant, but seemed very relaxed. I could feel the odd tear or two rolling down my cheek and I remember thinking I must keep myself together; I didn’t want to break down in front of complete strangers.

The BCN came back and took me into a room labelled ‘The quiet room’. She gave me my appointments for the biopsy and follow-up appointment and asked me if I was alright. I explained it was such a shock after all my benign lumps and I had been so sure this one would be the same. I could feel myself welling up again – there was a box of tissues on the table so they obviously were ready for this even if I wasn’t. I babbled on about my brother and sister-in-law’s marriage breaking up after her mastectomy and how it had crossed my mind about it being Friday 13th, but I wasn’t particularly superstitious. I was told my reaction was perfectly normal and she would have been worried if I hadn’t been emotional. She also said I would never think of Friday 13th in the same way again! She agreed it wasn’t a good idea to go back to work and I needed time to take it all in. I decided to go for a little walk to compose myself before getting the bus home, but when I was outside the hospital I knew I wasn’t in a fit state to do anything other than walk to the bus stop. I can remember welling up a couple of times on the bus, as thoughts raced round my mind, but was so pleased I was able to contain my tears.

I knew I wouldn’t be able to talk to anyone without breaking down so quickly e-mailed work to explain the situation. They had expected me back at work by 11.00 am for a meeting and it was after 3.00 pm now.

Telling my husband was hard. Like me he expected it to be another benign lump. He’d offered to come with me, but I’d told him that there was no point, I would be fine. He’d done the shopping for me on his way back from work and it wasn’t even on his mind to ask me how I got on. I told him I hadn’t been to work and he thought I wasn’t feeling well. I reminded him that I’d gone to the hospital and told him I probably had breast cancer; I could see the shock on his face and we both welled up together. We had a cuddle and a little weep and I explained what had happened. We agreed to tell our sons, but no-one else until the biopsy results were in. I could hear the break in my voice as I told my eldest son. I couldn’t get hold of the youngest that evening, but left a message for him to call. We went to our usual Friday dance that evening and didn’t tell anyone. It was good to get out; it took our minds off it to an extent, although we had a few emotional moments whilst we were dancing together.

The next morning I caught up with my youngest son and explained the situation to him; he was very quiet and didn’t say a lot, which worried me. I felt more resigned to it now and knew I just had to deal with it, but one stage at a time at present. It was a strange weekend, but I was feeling more and more positive about the outcome.

Monday I held a meeting and told the people I work closely with that it was 98% certain I had breast cancer. I felt it fair to tell them so that if I did have a wobbly moment or acted out of character they would understand. Everyone was very supportive. It wasn’t too bad being at work, but I did find it harder to concentrate. On my days off that week I tried to find out all I could about breast cancer in preparation for my results. Would I be better off having a mastectomy? I was concerned that having had 15 years of benign lumps this may indicate a higher possibility of recurrence somewhere else in the breast and it might play on my mind.

Tuesday I had my biopsy and then Friday I saw the consultant for my results. He confirmed I had lobular cancer that looked to be Grade 1, the lowest grade, and he would do a lumpectomy and sentinel node biopsy. Both he and the breast care nurse were adamant that a mastectomy was unwarranted, although he explained every woman with breast cancer had a right to one, but he would want me to have counselling before he agreed to it. He explained that the psychological impact of mastectomy was huge and radiotherapy would mop up any other cell change and sterilise the remaining breast tissue. Surgery was booked for the following Tuesday with a sentinel node scan on Monday.

I started telling friends that Friday, but remained composed this time and I felt very positive. My husband seemed to be very positive as well. We told our sons and over the weekend gradually told the rest of the family. I did get a little upset saying ‘goodnight’ to our dancing friends on the Saturday. I knew it might be a while before we would see them again and I felt sad we were not going to be a part of the group for a while. I had mentally prepared myself for having different sized breasts and the radiotherapy to follow and felt quite positive about the outcome, although I was not sleeping very well; I kept waking up at 2.00 am with thoughts whirling round my brain.

When they discovered I had a second lesion, whilst inserting the guide wire for the lumpectomy, I just seemed to accept it and it made sense for them to remove that at the same time as the first one. It was a bit of a shock when the consultant came to see me just before surgery to explain that with 2 cancers in the breast it was likely there would be a culture of changes and I should think of this operation as a staging procedure for a possible mastectomy. I asked what grade this lesion was on the mammogram and he said it was 4 out of 5. I knew then it would be another cancer.

After I came round from the operation I felt rather sad and my husband knew there was something wrong as soon as he saw me. I told him what had happened and I could see him well up again, as I did. The rest of the week was a real rollercoaster of emotions. Thursday, 2 days after the operation, I couldn’t stop crying. It felt just like bereavement; I was pleased the GP had said this could happen, as it was easier to recognise and also somehow comforting to know it was a normal reaction. No matter how much I tried to cheer myself up, it just didn’t work. I couldn’t concentrate on anything. I wasn’t feeling negative about my outcome and I didn’t feel sorry for myself. It was just as if there was this hollow, empty feeling within me and an incredible sadness that I could remember feeling after my mother died. I got through the day doing the things I normally do, but with tears continually rolling down my cheeks. I decided that perhaps I needed to allow myself this one day of self indulgence and then I would be able to move on emotionally and it seemed to work. It helped that I had made contact with 2 women through the Macmillan Community who were going through a similar experience and we could be honest with each other about how we felt. I was honest with family and friends as well. How could they support and help me if they didn’t know how I was feeling? Perversely, I was also feeling slightly neglected. No-one had called or visited, although I had a room full of flowers and cards.

A family birthday party on Sunday cheered me up. It’s strange though how some people come straight up to you and say how sorry they are and hope you’re coping OK. Others say they are sure you’ll be fine. Every time someone said that it put doubt in my mind, although I was continually telling everyone else that I would be fine! Others avoid you because they don’t know what to say, or perhaps because they don’t think you want to talk about it. My youngest son was very quiet still and had taking to phoning his father at work, which was most unlike him. I had a chat with him and explained it was hard when people didn’t know what to say and all I needed was someone just to ask how I was today and that seemed to do the trick. He’s been fine ever since.

On Monday it was confirmed that there were 2 lobular cancers in different quadrants of the breast. The first one was 1.1 cm and the second around the same size, but because lobular cancer cells tend to form randomly in stringy lines they could not be felt as lumps. Lobular cancer is often not detected early for that reason, so in a strange way I felt that I should count myself lucky that the fatty lump appeared otherwise it would have been another 18 months before my routine mammogram. It can also be multifocal and/or appear in the other breast at the same time so a MRI scan was carried out. No further changes were found and I was booked in for a skin sparing mastectomy with immediate reconstruction.

skin sparing mastectomy