Bizarre happenings, is it just me

FormerMember over 5 years ago

13 replies
42 subscribers
7612 views

I am trying to make sense of things so forgive me if I just sound off.

I saw my oncologist in May and he seemed a bit concerned and referred me for a CT scan and back to what is called our "one stop shop" for mammogram ultra sound, biopsy and see the surgeon.

The CT scan came through quickly but other referral seemed to get waylaid and I knew the surgeon was probably not too keen as he had refused to operate 15 months earlier for reasons no one understood at the time but it boiled down to him thinking it was a waste as he could not even give me 3 months.

Yesterday however I went to the one stop shop, as I sat and waited it dawned on me due to the time it was unlikely I was getting any tests especially as I saw the ultrasound equipment and the mammogram nurses leave. But you sit and wait in some ways relieved as they hurt. Once in there the surgeon arrived and we exchanged pleasantries. He thought it was about a year ago he had seen me and I said it was nearer 18 months so I had out lived the 3 months he had given me. He then explained that he was not wanting to do a biopsy today now the cancer had spread to the lungs. Well my husband and my face must have been a picture and the nurse asked when are you seeing your oncologist for the results and we said tomorrow. Some back pedaling followed but it felt my fate was sealed. It was left that things are to be discussed at MDT.

So today we tottered off to the oncology appointment. In he came " how have you been on treatment ", off it for a while due to a virus I replied. Good we will continue and see you in a few months. We asked about scan and test results, "what results". We briefly said what we were told yesterday and off he went.

Yes it is in the lungs now but just the one lung second breast cancer is growing but the first cancer secondaries are all stable. Oh sorry it is in both lungs my mistake.

We had questions which it was clear was no use asking as he was totally unprepared.

I know there is no good thinking about what if's but I really want them to know I am not happy that my request for surgery was dismissed 15 months ago when if it had of been removed it may not have grown and spread. Also that my oncologist did not follow up on the January scan this year when it missed reporting on the one tumour that was growing after I emailed him and spoke to him twice asking if it had been done. Perhaps then they could have operated. Most of all I am annoyed with myself as I knew something should have been done.

Now it has spread to the lungs and the skin so I can't see an op working.

I have been told they need to get together and talk and they will see me in 6 weeks hopefully with some options.

I am not stupid I know things come with a cost and l have probably out priced myself.

Has anyone else found themselves having to inform the oncologist of results. In 2017 I sat infront of a screen with him while he showed me a scan I read the words which said "the disease has progressed to the Liver ". He said where does it say that and assured me it was a mistake 4 weeks later it was confirmed it had spread. Now today I tell him it has spread to the lungs on the last scan and he has never seen it.

I just hope and pray things improve for the next generation.

Hope you are all managing to dodge the bullets out there.

Love

FormerMember over 5 years ago in reply to FormerMember

Hi folks

After the confussing appointments of a fortnight ago I was left not knowing what if anything was going to happen next and no appointment till August.

However I had cause to ring last week and track down a breast care nurse to see if the growing nodes in my armpit could be causing weakness and pain. The answer was that it was probably lymphoedema and she asked what was happening. As I explained I had no idea she checked and told me I had been discussed at MDT and I was to be seen in clinic again. She rang me back later to say I had an appointment today.

When we were seen by the surgeon, who I had seen last April and 2 weeks ago and been told he would not even do a biopsy never mind operate and gave graphic details why, that he was going to do a mastectomy next week.

I was stunned but managed to ask why now and not earlier, was he now saying he would be able to close the wound (as he had said not). Now it had spread to the lungs would doing the op delay the spread in any way. To these the answer were yes he could close it but that the op would not have any effect at all on my prognosis. He went on to say it was simply to eleviate the pain, which he had always said was not a reason for a mastectomy. I felt very much that he was saying he still did not think it was necessary but MDT had said he was to do it.

I asked about recovery time, what is involved, what about infection risk especially as my bloods can be very low. He then realised I was still on meds and would normally want 2 weeks clear and my bloods would have to be above a level they seldom reach. Also often my neutophils drop significantly in my rest week as they stay in my system.

He wants a reply by tomorrow as he is keeping the slot open.

I have to admit the thought of a mastectomy scares me, the thought of being in hospital scares me even more but making the wrong decision on little information is terrifying me.

I have all sorts of questions going round my head and I am really worried that things could be made worse. As this is what I have been told for 15 months so getting my head round this is really hard.

There again if last year when it was a small lump with only one lymph node affected, as I was physically very strong, I would have jumped at it. However are we now just closing the door after the horse has bolted.

I am trying to find out information from the internet and making a pros and cons sheet. At present it boils down to as it has spread both ways to lung and skin if it breaks out of the skin, fungates, then surgery will probably be out and this apparently could keep getting infected and they would stop funding for my Ribociclib which is keeping the other cancer in check at present. But it might not happen or the lung Mets might kill me before then.

In all this I am also thinking I have planned to take my grand children away for 3 nights on 22nd July, 3 days after the proposed op, this will be impossible.

There will be some people that must think I would be foolish to let the opportunity pass and I should do it straight away but I don't feel this is right. I have had no pre op checks, I am still on my drugs which weaken my immune system and I have no idea what to expect. I have problems with anesthesia at the best of times.

I know it has to be my decision but if anyone has any pearls of wisdom I would love to have them.

FormerMember over 5 years ago in reply to FormerMember

Hi Maz wow that's a lot to take in. Surely it's not like the DFS Sale ie get it now before the offer ends. Can your surgeon not reschedule to after the 25th when you've had a chance to think, get off your meds and take your grandchildren away? It feels like everything is being rushed and you are being pressured into doing something that you're not sure about.

Let us know how you get on and what you decide to do.

Hugs xx

FormerMember over 5 years ago in reply to FormerMember

Oh Maz, what a terrible position to be in. I wish I did have pearls of wisdom for you, but a couple of things jump out.

You should not be making any decision based on information you found on the internet.

Any potential benefits, contra indications. risk factors etc are unique to you. After all this time and all you’ve been through that is the very least you should expect.

If someone was putting pressure on you to make a decision about buying double glazing or a new roof, it would set all sorts of alarm bells ringing. It’s simply not reasonable for them to do a U turn and expect an instant response.

You’re left with the impression that this is against the surgeons better judgement. WTF!?!? How can you possibly have any confidence in this decision, which you also seem to have stumbled on by accident.

I would make 3 nights away with your grandchildren a priority, it’s not ok to spring this on you.

Ask for a second opinion, and ask for someone from PALS to be there.

Get THEM to explain pros and cons, and reassure you that in-spite of what they said before, they truly believe this is the best way forward for you.

Daloni said to a certain extent we all have to project manage our own care. I completely agree, but in your case you’re faced with making decisions beyond the scope of a project manager, without all the facts you need AND with a virtual gun to your head.

My language deteriorates during sleepless nights, but I’m f***ing furious on your behalf

Hope I haven’t made you feel worse.

Something else to worry about, but subtlety is a luxury we don’t need at times like this.

Thinking of you & sending love & hugs xx