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.

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10 thoughts on “Meeting my surgeon, MRI results, ‘incidental findings’ and decisions

  1. Oh Allie, what a horrible hospital appointment you endured. It is so difficult to make choices in such situations. Well done on having questions and such, I could never think of questions at these times but for me, I didn’t have a choice of lumpectomy or mastectomy due to the size of my cancer.

    Sorry to hear you have to cancel your holiday and doubly sorry for this ‘new’ finding. How does one ‘park’ it? It is like telling the flood of water coming through the front door to just ‘wait there’ while you tackle the kitchen fire down the back of the house. You can’t just ‘park’ something like that.

    Thank goodness your surgery isn’t far away and you can be done with that part of the process.

    Thinking of you

    xx

    Liked by 1 person

    1. Hi Amanda,

      Thanks so much for reading my post. It was such an upsetting appointment and making that sort of decision was so hard – but it’s done now. I must just put my trust and faith in these people that it was the correct one – onwards and upwards.

      That’s a good analogy ref the incidental findings! I had to believe it wasn’t a cause for concern at this stage..although I went away and Google’d it all like mad. Google can be your friend one day when you want to know the lottery results or a quizz answer, or foe the next when it chucks out results of a medical condition!

      Kindest regards x

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  2. I remember how overwhelming it was for me at the beginning of my mess while my team of doctors were recommending a treatment plan. It was hard to even think of the right decision to make.

    Like you, my surgeon had told me that the survival rate was the same for both lumpectomy and mastectomy. Now there are two benefits to doing a mastectomy. One is that it lowers the risk of getting a new cancer by over 90%. For example, if you now have an estrogen + cancer, your risk of getting a triple negative bc drops by a lot. The other benefit is the level of anxiety goes down – less tests. Although there have been cases where women still get MRI’s. It is a very personal decision only you can make. You need to do what’s right for you.

    They had to go back in a second time to get clear margins for me.

    I now need to take tamoxifen for 10 years. Blah! I might take a break next year.

    The wait is the worst part of this whole experience. I can’t stand it. I am glad you have your results and you’re proceeding to the next step.

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    1. Hey, is yours oestrogen + ? (Mine is). Have you started the Tamoxifen yet? The nurse said I’d need to take that for 5 years, then the Dr said the latest results show that it’s better to take for 10 years. I just hope I can squeeze a window to try and get pregnant in that because in 10 years’ time it will be far, far too late in life for me.
      Sorry to hear they had to go back in a second time x
      Oh yes, I can so relate to you on the waiting part.
      Take care xxx

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      1. Allie, my tumor was estrogen and progesterone +. I have been on tamoxifen for over 3 years now. So far doing OK except the vagina dryness is driving me crazy and the mood swings as well. But everyone is different. You might experience nothing as many of the side effects from Tamoxifen are rare.

        Like you, I think waiting 10 years to have a child is too long. Good luck with everything.

        Liked by 1 person

  3. Yes welcome to the world of waiting and making decisions. I can so identify this context, you want answers and guidance and whilst we think we want choice, there is a part where you just want someone to say ‘this is what we’re going to do’. I was definitely in that place and had moments where I didn’t want any responsibility as such for what was going to happen. Not in an uninformed way, but my brain just wouldn’t function. Cancer fug! x

    Liked by 1 person

    1. It’s great that there is choice, as some patients probably want complete control over making such vital decisions, and rightly so. I think I knew deep down inside that I didn’t have the guts to have a mastectomy – each choice would leave its mark on me physically and mentally so I went for the less radical option, trying to use the doctor’s knowledge and experience as my decision compass. I just hope it’s a decision I don’t come to regret later.

      I like your term ‘cancer fug’ – I can definitely relate to that!

      Xx

      Like

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