I liked Dr. Leong immediately. She has a calm efficiency, and a good bedside manner. One of the first questions I asked is “Do I have actual cancer?” and she said “Yes.” without hesitation. So that’s that then.

We talked at length and I took on a lot of information about statistics and pros and cons of  treatments available. I  found a lot of the terminology over my head and had a few Homer’s brain moments where I zoned out entirely.

There are still big gaps in my knowledge but fortunately no decision needs to be made right away. The next step for me is an MRI which will identify if there are any other cancers within the breasts -WTF?! You don’t know this already? Apparently not, ultrasound/mammos are only partially effective for ‘younger’ women with denser breast tissue (which makes me laugh given the state of my poor envelope flaps).

Unfortunately, mammograms miss 20-25% of all cancers. They also underestimate the size of DCIS in a third of all lumpectomy patients. When this happens, the surgeon misses some DCIS and another surgery is needed. MRIs, which use magnets rather than radiation, can find what mammograms miss. According to a 2010 JNCI article by Dr. Constance Lehman : “Over the last decade, research has confirmed that of all imaging tools, MRI has the highest sensitivity in detection of DCIS (compared with mammography and ultrasound).” Although MRIs are considerably more expensive than mammograms, avoiding a re-excision would not only be less costly but also less traumatic.

While I’m fortunate to have access to an MRI it’s a reminder that the medical community can do the best they can but no diagnostic tool or treatment is perfect and all decisions have inherent risks.

Treatment choice is either breast conserving surgery (lumpectomy) or a mastectomy followed by a reconstruction. Once hearing of the downsides of each I felt as if I’d been offered the choice between a kick in the teeth or a punch in the bollocks.

Lumpectomies are less invasive and require a shorter stay in hospital. But they also require five weeks of daily (daily!) radiotherapy. The surgeon can’t know for sure the size of the affected area, so what’s extracted is biopsied and if the clearance is insufficient, back in they go. There is a 10% recurrence rate.

Mastectomies are a more complex procedure with a bigger wound (no shit!) plus there can be complications associated with the reconstruction and a risk of lymphoedema (mum had that – not at all pretty). There is a 0.3% recurrence rate. I’d also be eligible to have the non-affected breast ‘done’.

I had been considering the prophylactic double mastectomy, a la Angelina Jolie, in any case so had been really open to the sledgehammer-to-a-walnut option. But I’ve since got scared off this a bit by the downsides.

Dr. Leong was happy to offer either treatment. However before going ahead with a mastectomy I need to be referred to a plastic surgeon (laughable given the contents of my make up bag are a decade old) and a psychiatrist (ironic because there’s absolutely nothing wrong with me noggin *twitch* *twitch*).

Mum’s treatment started off with a lumpectomy followed by radiotherapy. The next decade were a catalogue of procedures that were increasingly invasive and misery making.

What would you do?

7 Comments on Some answers, more questions

  1. Shit happens Sam and in the scale of things this is big shit.X This is a disease that you can beat. Do everything you can to give yourself the highest odds of success. A good friend of mine, Alexander Technique teacher, Sylvie, who is by nature a naturalist did everything, mastectomy, radio therapy and chemo, she could as soon as she could in order to be in the 70% survivor group. Glad Denise will be with you all soon as an extra source of support. Stay strong and focussed. Let me know if there is anything I can do from here. XX

    • Thanks, Les, I am glad to hear the good news story. It all helps me stay positive! I was desperately looking forward to having Denise here anyway, now I think I’ll cry with relief!

  2. Hi Sambo, it’s shit feeling like you’re between a rock and a hard place on a decision like this one – and obviously none of us can make the decision for you. But I know that your intuition about what’s right for you is going to be strong and sound, and something you can rely on as always. Even if you need lots of chats with JP and Dr. L before you can figure out what that intuition is telling you.

    If I can offer one piece of advice, it would be to try to avoid the temptation to assume that what happened to your mum is what will happen to you. Those memories are really graphic and really gut-wrenching so it’s natural they’d come up at a time like this, but please try to bear in mind that her treatment occurred a really long time ago, and the therapies available have improved dramatically. As your lovely friend Lesley put it, ‘This is a disease you can beat’.

    I love you and I love your spirit. xxx

    • Jayney what lovely sentiments, thank you for sharing, and for the reminder to stay tuned to my intuition. You’re right that I have to be careful not to assume I’ll meet my mum’s fate. I, like you, used to think treatment will have advanced but if 10 days of frantic Googling have taught me anything, it’s that they actually haven’t! Lumpectomy, radiotherapy, mastectomy, chemo, Tamoxifen… this is terminology familiar to me from 20-30 years ago. However where advancements have been made is in the reconstruction field. This is encouraging. But I will be ready to make a decision very soon and will of course share it when I have.

  3. I’d go for the kick in the bollocks, personally, as I’m sure men over dramatise the pain. Shitty news, Sam, and I’m glad you’re allowing yourself to lose it now and again because it’s fucked. It’s good to be strong but it’s also good to be fucking angry and upset, which I am on your behalf. Being a writer, I think one of the ways to get through this is to write about it, as you are doing. Love from us both. xx

    • Hi Mez, I am with you on the bollocks front. While I’m calm overall I do also feel exceptionally angry and at these times, f and c bombs are dropped left and right. The blog has proved helpful for a number of reasons, thank you for your encouragement. Good luck with your big move, can’t wait to hear how life in China goes.

  4. Hi Sam. Only because you asked, this is what I would do. At least I think it’s what I would do…I don’t think you ever know what you would do until you’re in the situation, but I’m pretty sure that I would go the full Angelina. I would take some time to thank my breasts for the amazing job they’ve done before retiring them and focusing on upside of a new pair. With love, Fel xxx