Incidental finding following breast cancer screening

Whilst going through the process of being diagnosed last year, I had an MRI scan of my breast area (the lump I found did not show up on the mammogram). At the subsequent follow-up meeting with the consultant, he had told me about the ‘incidental finding‘ they had found.

Incidental findings are defined as a ‘chance discovery in a patient which may warrant further investigation.’ I was told at the time that they didn’t believe that what they had found  was sinister looking and they recommended parking any further investigation until I’d completed my active breast cancer treatment.

In March this year I went to visit the chest surgeon to follow this up and discuss further. He started the conversation off with “So we’ve had a letter about a spot of bother on your lung.” This immediately made me feel anxious as they’d never mentioned anything about my lung before. He said there is a bump where the lung is, away from the chest wall, and that this is not usual and it shouldn’t be there. He said it was slightly in contact with the big artery coming out of the heart, but that the scan he had in front of him wasn’t detailed enough to be able to make a judgement on it and so he requested I have a further CT scan with dye contrast.  This scan with contrast would allow him to see all the arteries, any relationship to them and if there was any blood supply going into it.

He said if it’s something that the report indicates is initially benign – usually, round  smooth things are not as sinister as things that have spikey bits sticking out. Cancer is the Latin word for crab (most likely applied to the disease because of the crab-like legs projecting from a tumour). He said that’s why people think if things are nice and smooth it’s less likely to be cancerous which is what they think this was likely to be. This appeased my anxiety a little, but doctors have to caveat their statements and can never say that they are 100% sure what something is. He went on to say that some things can grow in that location and cause problems, not necessarily by spreading around the body, but just from them growing locally and causing problems. He said it was right for me to be referred to them to ask an opinion on whether it is something that can be left or if it needs to be taken out.

The resulting CT scan showed that the cyst had not grown in size and was roughly the size of a grape. I was then presented with two options – I could either have it removed, or we could take a ‘wait and watch’ approach where I would continue to have regular scans to see if it changed in size etc. Given the events of last year, and the fact that it was something that wasn’t meant to be there and could potentially cause issues later on in my life, I knew I absolutely wanted to have it removed. I would then not have it hanging over my head and be worrying about what it might be.

Because the surgery was non-urgent, the consultant said they could pretty much fit it in around my schedule and work. By this time it was April and I knew if I agreed to have it done then, good old sod’s law would be at play and it would probably be scheduled for my birthday in May. As we’d already had to cancel our holiday last year due to my surgeries and this was a special birthday, I wanted to make sure we got away as planned so I suggested that June would be a convenient time.

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As is the way of life, nothing seems to run smoothly and there is always a curve ball or challenge thrown into the mix to keep you on your feet. I had a couple of challenging episodes (one for another post!) in the lead up to my proposed surgery date so I had to request that it be rescheduled. Luckily the hospital staff were very understanding and enabled me to have my op on another date.

One of the reasons I had asked to re-arrange my surgery was because I was at second stage interview with one particular company. I knew I wasn’t going to be able to drive for four weeks after the op and I didn’t want it to ruin my chances of getting the job. I’d hoped to be able to secure a job before I had my op so I could rest and recoup without the worry of having to job hunt. Luckily the afternoon before I was due to go into hospital, I received a phone call from the company I’d been for an interview with on the previous Friday to tell me I’d been successful and that they wanted to offer me the job. Yaaaaaayyyy! Apparently, I’d come out scoring on top out of all the interviewees for both the written test and the interview. Thank you, a bit of luck at last!

It was my lovely friend Katherine’s birthday that evening and ideally I wanted to be tucked up in bed nice and early ready for the super early start at the hospital the following morning. But it was a special birthday and I didn’t want to not be there for her. Due to the fact that I was driving that night and with my op in the morning I didn’t really get a chance to raise a glass and celebrate my new job offer. One for another time!

I was going in to have Video-Assisted Thoracic Surgery (VATS) to remove the cyst from my left mediastinal area. The operation would take 45 minutes to an hour and would involve the surgeon making three incisions down my left side in the chest wall near the ribs. This would allow the insertion of video/camera equipment and surgical instruments. He would use the existing scar I had from surgery last year to save making an extra new incision. My lung would then be collapsed and a thoracoscope placed into the chest. The thoracoscope allows the surgeon to see inside the chest. After successful removal of the cyst, a chest drainage tube is inserted and the lung is re-expanded.

vats SURGERY

Whilst I just wanted to have this thing that was inside me out, I was really quite nervous about the operation. I’d have to stay in overnight – I’d never stayed in a hospital overnight before, not even with the ops I’d had last year. They were going to collapse my lung which did frighten me somewhat. What if it doesn’t inflate again? What if they find something unexpected? What if they have to convert to open surgery?

Once again the amazing NHS staff were all extremely friendly and made the whole experience more bearable and less nerve wracking. I did have a rather long wait, having arrived at the hospital at 7.30am I didn’t go down for my op until 12:30 –  I was missing my morning cuppa!

The anaesthetists seemed to have great difficulty this time in locating a good vein, so after a few attempts I had a smaller one put in my wrist area and they said they’d put a larger one in once I was under. “It will still be as effective won’t it?” I asked worryingly. “Yes it will, don’t worry you won’t know anything about it,” he said reassuringly.

The next thing I knew I had awoken in the recovery room with a nurse sat next to me and I had things on both of my ankles inflating and then releasing periodically. I vaguely remember my surgeon coming round and tapping me on various points on my legs and asking me whether I could feel him tapping those points.

After a period of time, I was then wheeled up to the women’s thoracic ward and was monitored every 15 minutes by a nurse. I had an oxygen tube going into my nose and I felt tired and a little away with the fairies.

Thankfully Pats came in to visit me later that afternoon and after we had made jokes about the very fetching thigh-high white embolism stockings I was sporting, he presented me with a little goody bag. It had a cute get well card in it, my little fluffy bunny that my sister had brought me a few years back and some treats to eat. It was too painful to be able to shift myself to sit upright so I drank water from a straw and, having not eaten for over 20 hours, managed to scoff down a cheese sandwich. Pats had bought me in some baby bells (got to have a cheese fix!) and a nice healthy green smoothie.

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Pats set up the TV for me and as he left I began to start watching the Andy Murray/Tsonga tennis match at Wimbledon. There were five other women on the ward and there was an older lady down the end to my left who I had heard whilst Pats had been there. As the evening progressed this lady progressively got more and more vocal. She was demanding things left right and centre from the nursing staff without so much as a please or thank you. I had to take my hat off to the nurses that night, they all had the patience of saints and continued to come to her calmly and professionally each time to take care of her every need.

By this point, I was in a lot of pain and even the shots of morphine weren’t easing it. It was a bit of a surreal moment really, I was laying in this really strange place in agony – I literally felt like I had multiple stab wounds in my chest and was desperately clutching my little bunny for comfort .. I felt like a child who wanted her Mummy!

In the morning a nurse came and tried to take my bloods but after two attempts she couldn’t get a good enough vein. I was still in a lot of pain and so continued on the morphine shots. I was feeling decidedly sorry for myself – I consider myself to have a pretty high pain threshold but this had brought me to tears. I laid there feeling really rather silly trying to hide my visible display of emotions from the other ladies on the ward.

Another two nurses arrived and said they would be removing the drain from my side. Oh, joy! I had to roll onto my right side, which was even more painful, and take a deep breath in. As I gradually breathed out they whipped the pipe out. Man, this sucked!

Another nurse came round to give me a wash in bed, a slightly odd experience, but it did make me feel slightly better. Afterwards, she suggested that I try and get out of bed and sit up in the chair. She helped me over to the chair and for a while, I sat quite happily drinking a cup of tea and munching on a digestive biscuit. I was feeling pleased with myself that I was making good progress. All of a sudden I came over feeling really odd, light-headed, sweaty and I thought I was going to be sick. The nurse said my blood pressure had dropped so helped me back into bed. Bugger, not so fast then!

By this point, Darren had come back into see me and my surgeon came round to discuss the op. He said they had removed a ‘nerve cyst’ and it was more tricky to get out due to it being attached to nerve endings.This was why he was tapping various points on me as he was concerned it may have affected my sensations in various areas (luckily it hadn’t). Whilst the MRI had shown the size of the cyst to be roughly the size of a grape, the consultant indicated with his fingers it was much bigger (approx 5cm). The cyst had been sent off for analysis and I would get the results in 10 days’ time. We discussed my funny turn on getting out of bed, and he said I should try again a bit later. It’s better for your lungs and chest to be upright and mobile as this prevents getting a chest infection or pneumonia.

A couple of hours later I tried once more to get out of bed and sit in the chair and luckily I was okay. I could see other ladies getting themselves up out of bed and going off to have a shower. This seemed completely unachievable to me at that point. Pats walked me to the toilet – oh the joyous things my poor beloved husband has had to do for/with me!

Once I knew I was going to be okay whilst sat out of bed I just wanted to get out of there and be at home. I was finally discharged at around 5pm the following day and given a bag of painkillers to take home with me. I was really sore on the journey home in the car as the pain relief I’d been given in the hospital was starting to wear off. I got home and when I looked at the paracetamol and ibruprofen in the bag I realised that was not going to cut the mustard. I rang the hospital medication number and the lady was surprised I hadn’t been given anything stronger to take home with me after what I’d been having in the hospital. Luckily Pats had some co-codamol in the cupboard so I took those and that started to ease the pain.

Shoulder pain is really common after lung surgery and I had awful pains in my left shoulder. It hurt so much to cough, blow my nose and even take breaths at times. That evening we started watching an episode of One Foot in the Grave on the TV, but it was making me laugh and cry with pain at the same time so we had to turn it over!

Pats looked after me so well that weekend bless his heart. He’d brought me a funny card and two lovely plants that he put in our bedroom so I could enjoy looking at the flowers. He’d made a scrummy dinner that night and helped me in dressing and getting in and out of bed etc.

Over that weekend my best friend Tara came over with a lovely bunch of sunflowers and my sister and her boyfriend sent a lovely bouquet of flowers and popped in to see how I was doing. I was also lucky and very appreciative to have received some very beautiful flowers delivered from my friends Lou and Debs and Jon and some thoughtful get well cards.

Andy-Murray-Wimbledon_alliemoon

I spent the majority of that weekend watching Wimbledon (well done Murray!). Pats had been to buy me some juices so I could have mocktails whilst watching the tennis so I didn’t feel left out. He is such a thoughtful babe!

Being mobile, moving about and walking  is key to recovering from VATS. Movement helps shift the phlegm that sits on your chest. When I left the hospital I was (agonisingly) coughing up brown bits (sorry, too much information!) which gradually faded to green, yellow and white. I walked around the house and garden and up and down the stairs trying to keep myself active.

As each day passed I improved and by the Monday I was able to walk to the local shops. Thankfully I was able to ditch the lovely white stockings after a week as they were really annoying!

I’m pleased to say that I’m recovering very well, and apart from hurting when I sneeze and a little tenderness (mainly in the night and morning) I’m not in any pain anymore.  I have also now had the results back from the analysis of the cyst and it was completely benign and nothing to worry about. What a relief. The human body absolutely amazes me in its ability to heal itself. Once again, thanks to the amazing NHS and to all the doctors, anaesthetists and nursing staff at Southampton University Hospital for taking such good care of me.

 

Images by genomesunzipped.orgsearchquotes.com, lwjuan.com, diapers.com and nanonews.org.

 

Meeting my surgeon, MRI results, ‘incidental findings’ and decisions

Having cancer seems to involve an inordinate amount of waiting. Waiting for appointments, waiting in the waiting room to be seen at appointments, waiting for results, waiting for scans, waiting for results of those scans. It would appear patience with a capital P is what’s required.

After another period of waiting we returned to the hospital to get the results of my MRI scan. I had felt really anxious and was dreading this appointment. My doctor began by giving us an overview of where we were at this point with my diagnosis. He said that the MRI had not shown any further cancer anywhere else in the breast or any abnormalities in the other breast. Phew! Pats and I looked at each other and smiled. Well that’s a relief I thought to myself, nothing else sinister there.

He went on to say that it had confirmed there was something in the area that they were concerned about. He said that obviously when they scan an area of the body, that by chance it would also show up other things as well. Oh shit…I grabbed Pats’s hand tightly, what the hell was he going to say here. “There are some incidental findings there as well. I don’t think these are cancerous and don’t think that they’re serious, but I’m not an expert on what these things are.” He went on to say that the scan had shown a 3 x 1.5cm lesion at the back of my chest (behind my heart in what is called the mediastinum area) which he said is most likely to be a ‘meningocele’.  There was also another one 6mm in size – a definite meningocele where the spinal chord exits. My imagination went wild, I tried to hold back the tears but I started to cry at this point. Holy shit, could I not come to a hospital and receive some good news for a change?!  What the hell is a meningocele?!

He explained that this wasn’t his area of his expertise, but that the covering of the spinal cord and the brain is called the meninges (when people get meningitis it’s this covering that gets inflamed). He said that a meningocele is an outpouching of  the meninges. He said his gut feeling is that it is something that my well have been with me since birth but that it would need to be looked by a relevant specialist at some point and I may need to have a more focused MRI scan.  He didn’t think it is related to the breast cancer.

Right okay, so not really sure what to do with that right now, when I heard the word lesion my world initially started to cave in.. maybe I’m riddled with it I thought.

I asked him if it was a cancerous lump and he said that they didn’t think it was likely to be – it was probably a benign cystic lesion and there was nothing to suggest that it’s cancer. He said we would need to park it for now and continue with the cancer treatment but that my GP should be able to refer me to a specialist. He didn’t think it was relevant or a cause for concern but obviously didn’t want to just leave it without further investigation and said we would carry on treating the breast cancer and then have it investigated.

Okay, I can go with that – far too much else to think about at the moment, so I would try and ‘park it’.

I then had a whole ream of questions to fire at him – he must have felt like he was on Mastermind the poor chap! He said he assumed I was sticking with the plan of a wide local excision, removing just the lump and not a mastectomy, which I agreed and said that had been advised to me. We had previously been told that there was no need to have a mastectomy as there was no difference in terms of survival rates as opposed to having a lumpectomy so it seemed the obvious choice.

He went on to say that a cancer measuring 15mm on the scan, could actually turn out to be 5cm. Cancer cells can be invisible to see on a scan or may look normal when removing in surgery – it’s only by looking at it under a microscope that they can tell for sure. The goal of the surgery would be to take out all of the breast cancer along with a margin of normal tissue around it. This is to be sure that all of the cancer has been removed.  The margins are checked after the surgery and he said that one in five people have to come back for more surgery because the margins are not all clear.

He then indicated with levelling his hands in the air as to the level of survival of people having a lumpectomy and those having a mastectomy. He said that, long term, survival is lower for those who have a lumpectomy over those who have a mastectomy.  However, if radiotherapy is used on people who have had a lumpectomy then the survival rates climb up. He said that whilst lots of people say survival rates are the same, there is a small difference – but not enough to say they don’t offer breast conserving surgery.

Those that have a lumpectomy have to have radiotherapy to sterilise the rest of the breast area. In terms of it coming back in the future, if there is no radiotherapy treatment there is a difference, however if radiotherapy is used, the rate comes down (not to quite the same level).  He said there is a slight difference in the chance of a local recurrence because obviously there is a larger amount of breast tissue left. But again, still not enough for them not to offer a lumpectomy – if that was the case they would only be performing mastectomies on people.  He said they do more breast conserving surgery than they do mastectomies.

I then asked him if it were his wife or his sister in this situation what would he recommend for them? He said that was a very difficult question to answer as there are so many facets to it. There are physical and psychological things to consider, if having radiotherapy, what are the implications of that? With so many swings and roundabouts there is no one answer that is definitely right. Great, a politician’s response – not what I was after!

He said he provides options and that they would support me in whichever decision I made. I started to doubt the decision that I’d made – or more, the advice that had been offered to us based on statistics.  Should I go for a mastectomy? How awful it must be to lose a part of your womanhood – could I hack that? Surely it’s better to be boobless than lifeless I thought?! I started getting really distressed as I hadn’t even considered along the way that this was really an option for me.

I know these guys do an absolutely fantastic job, but I was looking to him as the expert to recommended what I should do for the best – take the choice away from me. I’m not good at making on the spot decisions quickly or easily.  I like to go away and analyse the pros and cons of a decision, evaluating which is the best option. But I could also see what he was saying – they give people options and it’s their right to choose.

I asked what the risk of it coming back in the other breast was and he said I’m at a slightly higher risk than someone who’s never had breast cancer, but I’m not at a risk level which would warrant them recommending treatment to the other breast.  The fact that I would be taking Tamoxifen which would reduce my risk of developing breast cancer on the other side too – by taking this it will half that risk.

I also asked how long I’d be on Tamoxifen for which he said that the evidence up until January last year was that five years was the norm, however new data now suggests that 10 years is better than five.  But he said that everyone is different and that could be tempered depending on the risk benefit. For some people the benefit of the drug is going to be high for others its going to be low depending on the risk of relapse. If someone had a very horrible nasty cancer, the drug would have more to do than a miniscule cancer.

After some time, and with some interjection from him, I finally decided to go along with the initial plan of the lumpectomy and completed the consent form. He went through the list of risks associated with the operation – severe scars, risk of infection, risk of clots in the legs, risk of bleeding which could go to the lungs – all of which are apparently standard for every operation.

He then went on to say that whenever operating on the armpit there are risks of stiffness in the shoulder, swelling of the arm (lymphedema) and a numb patch to the upper arm. They would also inject a blue dye and a radioactive substance into my breast so they can determine which glands to remove from the armpit. The blue dye apparently stains your body fluids for 48 hours so I could potentially cry blue tears, pee blue urine and I may look a bit blue-ish in colour – a bit like a Smurf! There also is a 1 in 200 chance that I would be allergic to the blue dye and could end up in intensive care. He said he’s done a number of these operations and has seen people end up in intensive care. Bloody hell this is scary shit!  I then signed on the dotted line.

I started to get really teary at this point, it had been a really long appointment with the doctor.. It was good to be able to ask all the questions I had, but it just all felt really mammoth.

Before we left we asked about the holiday we had booked to go to Cyprus on 27th May and he recommended that as my surgery was on the 22nd that we should cancel it as it would be safer to be in the UK just in case I had any issues.