Looking for the facts.

[Annie69]

Hello all you kind and wise people.

I have been feeling a bit aggrieved over the last few days because I have not been given full information by the hospital doctor and nurse. I came across one useful cancer site which explains what the abbreviations mean on the biopsy report which, according to them, "you should have been given..."

I was given nothing and when I phoned for more information my very nice cancer nurse read me a few extracts: "It is ER Positive, which is A Good Thing and a Grade 2, which is Slow Changing and also A Good Thing." This is the best quote: "If you have to have cancer this is the very best type to have!" I felt about 5 years old being talked to by teacher. Blue skies and little pink bouncy clouds hovered above me.

I am a 73 year old graduate and still working, feeling very silly to have been scammed by niceness.

Both the Consultant Surgeon and the Specialist nurse, also pretended at first to know nothing about Internal Operation Radiotherapy Treatment (IORT), which a friend of mine had and says I must insist on. If you would like to see how it works you can Google it. The medics then said it had not been OK'd for use yet but I know it was approved by NICE in 2014. Then my medics let it slip out that there are 6 centres for it in the UK.

Does anyone else know about this treatment, or even experienced it? I would really liked to know, please.

Thank goodness for this site and the opportunity to read other people's experiences.

[vwel]

Hello, I know what you mean about being talked to like a kid as I was spoken in the exact same way by some of my team, so I can really sympathise with you.

I've not had any experience of IORT but it could be worth seeking a second opinion from another oncologist if you feel passionately about it.

Much love,xxx

[Hidden]

Hi Annie69. I am so sorry about your diagnosis and that you are so frustrated with your Care Team.

I have no personal experience nor knowledge of IORT. I have been reading around the internet about it today. It is thought to be more advantageous to patients over the age of 50 (probably for their convenience). It seems (smaller) tumor size is a factor in whether one is a candidate for IORT (as example, I found an in-progress study which sets its tumor size limit at 3 cm.). I also found that the procedure is done only coincident with -- immediately following -- lumpectomy.

I think you should make contact (or have your Care Team make contact) with the treatment centers offering IORT to find out if you would be a candidate for that treatment.

Good luck and warm well wishes.

[Maz1965]

Hi,sorry to hear about your diagnosis... This is tough enough without feeling as though you are fumblined around for information.

I had amazing oncologist who told me not to surf the internet but if i wanted to find out any information the to use the Macmillan one and only that.

I dont know about IORT but may be worth checking there or giving them a call.

Good luck with your treatment x

[Annie69 in reply to Maz1965]

Hello Maz,

Thanks so much for replying. Calling Macmillan is a good idea. My cancer nurse has said call her if I have any questions, but if I don't know what the problems/issues may be I won't know what to ask! I agree the Macmillan site is excellent.

Thanks again

Ann xx

[Hidden]

Hello Annie. I changed my first oncologist because they were incompetent so totally understand your predicament.

You are entitled to see a copy of all your medical notes but will need to request in writing and they may charge an administrative fee. There are guidelines on the use of IORT and it might be that you don't fit the criteria, however I suspect you have researched this bit, so challenge if you think you are!

Change you team and hospital if you are not happy, your body, your wellbeing. I would strongly recommend discussing with a clinical advisor in Macmillan, use the free helpline and ask to speak to a clinical person, they will happily oblige.

Breast Care .org are good on information too.

Good luck with your endeavours!

Xx

[Annie69 in reply to Hidden]

Hello emonty.

It is very kind of you to reply so fully. I had an appointment with my GP yesterday and although he was honest enough to say he didn't know anything more than I could look up on the net, did tell me about getting a second opinion, which I am looking at today. I have the feeling that cancer medicine is moving so fast that sometimes it leaves the medical profession behind!.

Did you have reconstruction? Were you satisfied and did you have a general surgeon or a plastic surgeon?

Thanks again

Ann xx

[Hidden in reply to Annie69]

Glad things are moving forward. I am due reconstruction next year as had complications following mastectomy, first Seroma for 5 months and then an infection that burst open the suture line and had to have it cut open further to allow it to drain for a month and now I just had surgery on Saturday for debridement and insertion of a corrugated drain. The drain will stay in for about 6 weeks and feeds into a stoma bag, not very sexy, and the surgeon is reviewing weekly and shortening it each time, as it could quite deep into my chest.

I should have reconstruction February 2017 all being good and will be having a diep or tram flap.

Good luck with your second opinion. Xx

[Sarawill in reply to Hidden]

Wow Emonty we sound to be on exactly the same path with complications. Annie I would definitely try speaking to an oncologist too xxx

[bravelady7]

When I said to my surgeon last year that I was going to explore options regarding radiation as I had clear margins and sentinel node and wanted more statistics about how much it would prevent recurrence, he said "Oh, you should have mentioned this before we operated as I could have recommended you come see me privately at The Spire because there we can use radiation as a one off during the operation. Unfortunately this is not yet offered on the NHS". This was the first I had heard of the procedure but also came across this quote on an american site which I quote below and also which site it is from. I would recommend you also post your question on the Penny Brohn website incase someone there has tried it and also ask Penny Brohn if you could talk to an integrative health doctor free of charge on the phone to get a professional opinion on how best to explore this new treatment avenue.

quote below taken from........radiologyinfo.org/en/info.c...

Are there any new developments in treating my disease?

Partial breast irradiation with brachytherapy or IMRT is being explored and compared to whole breast irradiation. Additionally, hypofractionated whole breast radiation therapy (shorter course of radiation therapy at higher doses per day) is currently under investigation.

[Annie69 in reply to bravelady7]

Hello Bravelady.

How very interesting. I saw my gp for advice yesterday and he said he didn't know any more than I could look up myself on the net. However, he did tell me to get a second opinion.

As I replied to emonty, it seems that cancer science is going too fast for the medics to keep up! I will explore your suggestions.

Incidentally, did you have a reconstruction, perhaps a double? I am not particularly vain but I don't want to be lopsided.

Again, thank you so much. what a lovely site.

Ann xx

[Vic1970]

I also feel like you,why do nurses assume everyone's an idiot or try and fluffy everything up,tell us the facts!

My nurse spent more time talking about hair loss and nails looking a bit rough than the actual cancer and chemotherapy treatment and physical side effects.Nausea,sickness and general food related issues are what I needed help with and I had to be very clear which drugs gave me bad side effects.I know the nurses have been trained a certain way of dealing with patients but perhaps they need to look at each person individually to try and understand which parts are important to them.

My advice is make it clear to them what's important for you to know and that you can deal with the facts.Good luck.x

[Annie69 in reply to Vic1970]

Hello Vic.

Thanks so much for reply. One thing I was also ignored on is the fluffy head syndrome mentioned by some other writers, chemo brain someone called it. I have a couple of weeks of brain work I HAVE TO DO before I give in to it, and a few words of advice from the medics would have been useful.

This site has given me more help and advice form lovely women than anything else.

Keep well. Ann x

[Vic1970]

I really don't think the nurses have a clue of what the side effects of chemo are like,they should employ a former patient to advise them and be available for new patients actually at the ward where treatment is given,instead you go home and hope for the best,then find out what it's really like from fantastic groups like this one.chin up and good luck(is that a bit nursey?!!!!)

[lovesradio]

Dear Annie, you have a great sense of humour and being 'scammed by niceness' is the best phrase I have heard for the 'pinking' of breast cancer which is still a shit disease with shit treatments. A former theatre sister that I know said the treatments used to be referred to as 'slash, burn and poison' and really, not much has changed. Good luck with getting the best and most appropriate treatment that you can for your particular tumour.

[Annie69 in reply to lovesradio]

Hello lovesradio.

Thanks for the compliment. Now, promise not to laugh at this: the oncologist, when I posed a simple question, gave a pretty laugh and said, 'No, of course radiotherapy doesn't burn, I don't know where you got that from - and we give you some cream for it.'

So that's OK then. A popular product down here in Devon is udder cream, very good for soothing human skin as well as cows, and very aptly named. I will order mine now.

Keep well x

[lovesradio]

Tee hee! Let's keep laughing at least when we can!