OK I Lied - The Interminable Wait is Affecting Me Big Time!

This is mostly just the ramblings of a slight mad person - so suggest you skip it!

Having been told on Monday evening to expect the HER2 result imminently, Ian headed off to Spain for a golfing holiday at silly o'clock Tuesday morning (I absolutely insisted he went).

But .......................... Onco rang me early Wednesday morning to say the sample had gone to Birmingham for retesting and in all likelihood the results would be mid next week.  She would be on holiday although would have someone covering for her, but she kindly wanted to let me know so I could manage my expectations! 😤😤😤😤😤😤😤

Now we are due to go to Australia at the end of October and the plan so far is for the belt and braces radiotherapy when we get back.  There is a certain timeframe within which the benefit of R/T is considered at its optimum and we know that I'll be at the end of that when we get home but if all the preliminary stuff is done before I go then the zapping can start immediately we return.  

But, as I've already mentioned, if this HER2 test is negative then a further sample will be sent to the USA for assessing the benefits of chemo and that'll take a further 10 days minimum.

The travel insurance won't cover all our losses if we leave cancellation until the last minute - we'd treated ourselves to Business Class so that pushed the price up.  I know it's only money (as Ian would say) but if we're going to cancel at the end of the day then should we do it now and mitigate our losses?

Also it'll only leave us 2 weeks to prepare for the holiday - sorting out extra care for Mum (Alzheimer's), getting the house ready for visiting family, buying presents to take for new grandson and once again I can hear Ian saying that's not important, but it is - there are all sorts of little things I wanted to take, like an iconic red London Bus - not a real one obviously 😉, stinger suits (for Great Barrier Reef), the list is quite extensive.

And the big one - as my cancer is borderline HER2 positive - if by some miracle I can avoid chemo, should I not be having the R/T as quickly as possible to ensure maximum efficacy.

Not being able to talk it through with Ian, I went into a bit of a meltdown - well that's an understatement really - I totally lost it and ended up phoning a dear friend who dropped everything and visited me within the hour (you know who you are - a huge, huge thankyou 💖💖💖).  Whilst waiting for her to arrive, I phoned Onco's secretary and asked her if she could find out some info for me to help in decision making.

Thanks to my lovely friend's patience and understanding, I slowly got myself calmer and, bless her heart, Onco herself phoned me again early evening - her gut feeling is that chemo will be necessary which is why our meeting went the way it did (exactly as Ian had interpreted).  I was happy for the cleaner or anyone to have phoned me back, but Onco bothered to do it herself and I feel very grateful to have been put under her care.

Ian and I Skyped later and turns out he'd been having similar thoughts so, regrettably we have taken the decision to cancel the trip.  Whatever the final outcome - chemo or no chemo - making the decision has given us a feeling of control again and somehow better able to cope with the wait for results. 😌

Phew, feel better for getting that down.

I’m Still Waiting

Channelling my inner Diana Ross “I’m Still Waiting, ooh ooh ooh ooh ooh”

We hung around all day yesterday, trying to find jobs to do with the telephone welded to one hand.  Onco had said she’d ring at lunchtime and if course that had quite a wide interpretation but by 16:45 we’d heard nothing so I phoned the Galton Unit but was told that she was still “in clinic” and then going straight off to a meeting.  The young lady who answered the phone promised to get a message to her before she left though - but we heard nothing 😞

Then at 20:15 the phone rang and it was Onco, she was still working bless her.  Still no result on the HER2 test but she has finally found out why - the person who does the testing is off sick!  Onco says she'll continue to chase daily and obviously let me know immediately.

I am so grateful to her that she bothered to ring, it restored my faith in her.

So, I’m Still Waiting ................... but at least I know why and that is manageable - well almost! 😨

My Diary Is Filling Up

I forgot to mention in my Onco post that whilst I was at the Galton Unit on Thursday I bumped into the breast care nurse who was in attendance when God aspirated the seroma 10 days ago and, as the antibiotics were due to finish the following day, I asked her if she'd mind having a quick peek to make sure it all looked OK.

She wanted to find somewhere a bit more private than reception (obviously) so took me through the treatment room to a small area at the far side.  The room was full of chairs, I didn't count how many, and in each one of them sat someone hooked up to a drip receiving their dose of poisons - I waltzed through feeling fit as a fiddle but it did hit me that in a few weeks I could be one of those poor souls (absolutely not allowing self-pity to creep in here, honestly).

Anyway back to the seroma, Louise seemed to think all was well, but before you could say knife she whipped out her pen and - I think you may guess where this is going - drew on me again!!!  As before, should the reddening spread outside of the markings, get more antibiotics.  So far, everything's looking good and the swelling is also well down.

One of the treatments that, allegedly, we don't yet know I need, can apparently cause osteonecrosis of the jaw so would I please make arrangements to have a full dental assessment as soon as possible.  I am somewhat embarrassed to admit that I don't regularly go to the dentist, so we decided to try the fairly posh looking dental practice close to home and waited the best part of 40 mins whilst the extremely self-important person in front went through her diary, hour-by-hour, until they could find a suitable time for her.  The receptionist didn't seem the brightest but was very sweet to me and calmed my nerves, assuring me they would look after me well.  The appointment was set for next week but Friday we got a call to say there was a cancellation that afternoon if I would like it - you bet I would, as Ian is still around to hold my hand 👫

My lovely dentist's name is Pumba (I think) and I keep having Reggie Perring-like moments when I see a warthog before my eyes (think Lion King).  She was patient, kind, everything you could hope for especially as I kept having mini meltdowns at the thought that neglecting my teeth may prevent me from having essential (???) treatment.  But all is OK, two small fillings and a good clean up needed - not cheap mind you, but I have a few year's ££££ in the tooth bank.

Oh and I must get a flu jab done - amazingly my doctors have booked me in for the first day their vaccines are delivered.

And now my appointment for the more extensive heart test has arrived in the post.

1st Meeting With Oncologist - 20 September

Yesterday we had our first meeting with the Oncologist (hereinafter to be known as Onco).  A very pleasant lady with many years experience, who I am confident will do the best for me.

But sadly my brain is completely fried following the meeting, so much so that last night all I could report to my sister, BF and S-I-L was that we were still waiting test results - this is perfectly true but there was so much more to the meeting that 24 hours on I am only just now able to assimilate most of it.

Right from the initial diagnosis the plan has always been surgery, radiotherapy and hormone therapy for 5 years and whilst chemotherapy has never been categorically ruled out, it has certainly not been up there with the other 3 treatments - so I am really confused as to why we have just spent the last hour and more talking just about chemotherapy. 

We discussed in detail what drugs I will have, for how long, how they will be administered, the side effects (short and long term) - she even wrote up the Consent Form although she didn't press me to sign it there and then.

We talked about the Oncotype test and the cut off point on the results scale for which chemo is given (>25).

The sticking point is the damn HER2 result which they are still waiting for.  I queried why it's taking so long as it was part of the original biopsy 2 months ago, although we know this came back borderline (2+) and was then sent for retesting under FISH (don't ask!)  FISH is supposed to give a definite negative or positive but it seems mine was borderline - Onco said that apparently another lady this week is in exactly the same position and she's never known it before and is now waiting for the 3rd case - great.

"Hmmmm, maybe there is someone new doing the tests or standards are slipping" methinks! (and yes I did voice that 😈)

Onco then said that they were pushing hard for an unequivocal result but the best they have so far is borderline positive - and Ian reckons that is exactly why the conversation went the way it did.

She is fairly confident of an answer on Monday and has promised to telephone us lunchtime(ish), presumably after the weekly MDT meeting.

If it does come back negative then we're back to having the Oncotype DX test done and in her words "if you were my sister I would definitely want that done".  As I've said before this involves the sample being sent to America and the results are usually within 10 days - Ha! I've heard that one before 😠

So, my mind is madly seesawing between HER2 Positive = Chemo, HER2 Negative = Oncotype = 10 days waiting = ?????????????????

Meantime I'm sent off for an ECG to check that my heart can withstand the chemo and a further appointment is made for another, more rigorous, heart test.

Last night was horrible, I didn't sleep a wink - the wild wind probably didn't help but having gained a feeling of some kind of control/order I am totally at a loss again.

So ........................... we wait for Monday but in the meantime I'll try to PFTWHFTB 🙏🙏🙏

MDT (Multidisciplinary team)

Medway's Breast Cancer Team is a multidisciplinary team consisting of surgeons, oncologists, radiologists, pathologists, nurses, radiographers, counsellors, social workers and secretaries who all have specialist training and experience in the diagnosis and treatment of people with breast cancer.

What has been evident to me already, is the kind and gentle way each and every person we've come into contact with has treated us.  Even receptionists and secretaries who, lets face it, can often be absolute dragons have been wonderful and feeling as emotionally fragile as I do most of the time, I am so grateful for not having to go into battle to get somewhere.

I believe the team meets weekly and discusses the cases and between them they come up with the best treatment plan, which is marvellous and means I'm not reliant on one specific person's opinion of what is best for me.

After the successful surgery, God told us they have so far decided that I will need radiotherapy to kill off any possible remaining cancer cells and then because I am ER+ and PR+ I will have hormone treatment for 5 years.  

So ..................... the big one still to be decided is whether I must have chemo and hopefully we will know more after we meet the Oncologist tomorrow.  Or will we just have to wait for another round of results ☹️

Oncotype DX

This test, which is only available in the US, looks at 21 of the genes in the cancer cells to try and see how likely it is that the cancer will come back in the future.  It's nothing to do with genetic (inherited) testing but looks for abnormalities in gene activity within the cancer cells.

The main reason for testing is to see how beneficial chemotherapy will be in preventing a recurrence on a case-by-case basis, as a lot of people have been put through gruelling chemo for no obvious benefit.

I think I've already said I'll only be eligible for this if the HER2 is negative but I'm very grateful I'm being considered possibly suitable as I know it is expensive (£1,000+) and Ian and I had already discussed paying for it ourselves if I wasn't offered it

So if I can score low enough on this test I probably will be advised not to have chemo, although I believe it will still be my choice (as is all treatment along the way).  Different resources give different numbers on the scale so I'm going to wait to hear from the Oncologist before I think too deeply about that.

But first I need the results of the second HER2 test because, as I understand it, if that's positive its chemo anyway 😟

Back to See God - 10 September

The 2 1/2 weeks since the op has gone very slowly and there have been many sleepless nights and worried days - was it all removed, has it spread to the lymph nodes, did he really tell me it was bigger than expected or was that a dream?

I've read and re-read all the leaflets, websites, forums you name it but of course there is nothing I can actually discover that will put my mind at ease.

We were ridiculously early for our appointment with God and yes, you've guessed it, he was running 1 1/2 hours late.  Actually I don't mind that because some cases need more time spent on them than the standard and one time that case might be me and I wouldn't like to be rushed.  From a waiting room full of people, it finally came down to just two of us waiting (with husbands) and we had a good laugh as to who was the lucky one and getting in next - yippee, it was me, I promised to be quick.

After the obligatory pleasantries we got down to the facts, the tumour was completely excised and no evidence of cancer in the 3 lymph nodes removed.  Thank God (both of them)  I don't think I have ever felt so relieved in my whole life.  The tumour was indeed larger than first thought 23mm not 18mm but when I asked God if he had told me that already, he said "No", but he had visited me in Recovery.

But apparently when I was stripping off behind the curtain, he looked back through his notes and with what Ian describes as a cheeky grin said "Oh, maybe she was right!"

The seroma was still quite large and very red and angry looking and he was most upset to see it and could not stop apologising.  The line of incision on the boob is just amazing, it's a semi-circle which follows the line of the nipple completely and I should imagine in a couple of years will hardly be noticeable.  So he is clearly a very clever and neat surgeon and to see the horrible red, lumpy seroma was obviously a shock for him.  But he aspirated again (50ml) this time and squeezed and prodded it about - ouch! prescribed some stronger antibiotics and, blow me down, drew on me yet again!!!  A circle around the area with strict instructions to switch antibiotics if the redness started to go out of the circle.

He has arranged for me to have a follow up mammogram and appointment in one year's time but for now is handing me over to the Oncology Dept who will discuss further treatment.  Oh and the HER2 test results came back borderline so they are retesting under a different method (FISH).  And if I am HER2 negative then I am a good candidate for the Oncotype DX test.