Dear All,
Firstly, a massive 'Thank You' to all that helped me at the start of my journey - you are all amazing people, I don't know where I would be without your support and I mean this, London Lass, toxophilite, Dreamthief, Snowys Mum, Heather77, Optimistic, mrsox, wombat.23, sue G, scared_2, Tzxy, Mistymoley, Pocket rocket, Indigo67, Mirabo, just mentioning a few of you, you have helped me more than you will ever know - you understand it, the worry, the down's, the tears, the tantrums, question after question, the through the night 'AWAKE' club - 'Thank You All'.
I wanted to give you an update on "What Happened" to me (hence my name on here) and for anyone new considering 'all treatment options'. I had a totally un-expected and soul destroying diagnosis of Breast Cancer...... all because of a very small 'dimple' (not a lump), a dimple on the outside of my left breast, at say 2.00 o'clock position.
My diagnosis: Ductal Breast Cancer - Grade 1, NST (Non Specific Type) 20mm diameter, ER8 positive - I don't have to tell you about the shock, the terror and feeling of total devastation that came over me. So what do we do, I like most of us here, jumped straight onto the internet and, thankfully find this website, we read and re-reading other ladies and gentlemen stories, we slightly start to calm down. I joined this forum and have met some of the most amazing, kind, caring, understandable ladies ever - people that I have never met gave me more hope, strength and guidance, more than lifelong friends and even family. For this I am truly and eternally grateful to you all, I really am.
My suggested treatment: would be Wide Local Excision plus sentinel lymph node biopsy, followed by, 3 to 4 weeks External Beam Radiotherapy treatment (EBRT) and, then either 5 or 10 years of adjuvant treatment (daily tablet). I am given the date of 3rd October, for my operation.
My research: Whilst waiting for my operation I began to 'look into various treatments'. My BC was on my 'left side', I start reading that external beam radiotherapy could be dangerous to the heart, maybe even the lungs, I am on the roller coaster ride, the various waves of emotion - all the questions, the 'what if's', etc. I start looking into this more, I find that there are ways to help avoid this by doing 'deep breath-hold' during radiotherapy treatment, I carry on looking, I then come across a treatment called 'Deep Inspiration Breath-Hold Radiotherapy' which is an effective method of limiting radiation exposure to the heart and lungs. This now sounds more reassuring to me, it is given externally over the same time frame between 3 to 4 weeks with I believe at boost at the end of the treatment. This option was only available privately to me and I made enquires, this looks like the way I will go. During the night times I continue with my research. I do believe 'fate' took over from here. Due to my worries and uncertainties, I am going to delayed my operation.
For me and I think for most of us at the time we are diagnosed we are literally thrown in to a feeling of 'total and utter despair, what our future holds, what future, are our lives about to be taken from us' - most of us go with 'what we are told' until, that is we join a forum such as this, we then see we are not alone, there are others here, others here willing to help us, advice us, guide us and support us - some may recall one of my initial posts after the shock was two different views on what operation I should be having the 'Wide Local Excision' or the 'Therapeutic Mammoplasty' - I had one particular response that was brilliant and it has stayed with me. I didn't go for the therapeutic mammoplasty (suggested by a different Consultant) - smaller boobs appealed to me, but, I couldn't justify putting myself through this if there was no need).
Back to my story, if anyone is still reading this....
I delayed my operation whilst I took time to looked into the radiotherapy treatments. I found one, if I was suitable, it sounded amazing, a 'one off' radiotherapy treatment given 'internally' directly focused on where the BC had been. It is given at the 'same time' as the operation, whilst under the same anaesthetic!! I looked into this, it is called TARGIT IORT (Intra Operative Radiotherapy Treatment). A 'one -off' treatment!!! it sounds fantastic, it does away with the weeks of daily travelling to and from the hospital for treatment, it avoids the possible damage and burning to the outside skin and avoids the heart and lungs.
TARGIT IORT - Targited Intra-operative Radiotherapy; is a radiotherapy treatment given at the 'same time' as lumpectomy/operation.
It is a 'one-off' internal treatment of radiotherapy - although some patients could need traditional external radiotherapy dependant on results of the tumour.
It is only suitable for certain types of BC treatments, including women 45 or older with hormone receptor positive, tumour size up to 3.5cm. It is not suitable if needing a mastectomy. Something else that many might not know, we can only have 'external' radiotherapy treatment 'once'. This is not the case with 'internal' radiotherapy, you can have additional radiotherapy treatments plus external too.
This really sounded to good to be true, I looked into this, I fit the criteria, I looked at all the questions I had, all the 'for's and 'against', all the what if's". This treatment was for me, it isn't currently available on the NHS, I don't have health insurance so, I will have to pay for this treatment (please don't think the money was not an issue, it was).
This is were my story could go on in a different direction, this treatment is within 'inches' of being available to all of us (that fit the right criteria) - NICE have come within inches of giving the approval/go ahead for TARGIT IORT .... however, they have had some appeals/objections from certain 'bodies/organisations' .... one being our very own NHS England, along with, I believe, the Royal College of Radiologists - I may post separately on this, I feel very strongly about this. We are being denied 'greater patient choice' - the NHS England should routinely mention to suitable women 'all' treatment options - we are being denied this. (The review is on the 8th December, 2017).
Patients would benefit both physically and mentally. Having a 'one-off' treatment of radiotherapy compared to 'weeks' would surely save the NHS both money and time, freeing up Radiologists and machines to treat more patients!
So back to my story....
I contact the Secretary, she is a lovely lady, kind and understanding, she listens to me and takes all my details.
I'll fast forward a little. I had thought long and hard about this treatment - two of my main key points of consideration on having this 'one-off' treatment of radiotherapy is....
I'm not telling my mother that I have BC - I had decided to say, I had a little 'lump' that needed to be removed. If I have the daily radiotherapy treatment I could not of kept this a secret for so many weeks, to keep disappearing out for a few hours each day, plus my maybe irrational worries concerning the external radiotherapy treatment, so my mind was made up.
I travel to see my Consultant, he is a Professor, what a man, so kind, caring, approachable, honest and genuine. Everything is arranged for me, ultra-sound, biopsy, skin tag marker, MRI, my bloods, MRSA screening, the nuclear dye to locate my lymph node, etc.everything is all in hand.
I am given my surgery date arrghhhh Friday 13th October!!!! - I said earlier, I had delayed my original surgery, this date was the 3rd October, so, after all said and done I had delayed by 10 days. (I am superstitious - again fate played a part here, half an hour after receiving the phone call to give me the date for the operation, I happened upon an old tablet box of my late fathers with the date (wished there was emojis on here) 13th October, 1997 - okay its 20 years old!!! but, 20 years to 'the' date - pretty strange if you ask me - I now know in my head, Friday the 13th will be okay :)
This is me all over, waffle, waffle..... so cutting to the chase....
My operation; I arrive at the hospital on Friday morning:-
10.30am - I meet my Anaesthetist, a very nice man.
11.30am - I am walking down to Theatre - I am greeted by a couple of lovely ladies, I climb on a trolley and I'm covered in nice warm blankets, they talk to me and 'try' to put me at ease.
11.40am - I see my Anaesthetist, we chat, he puts a needle in my hand.
11.zzZzz - I've gone zzzzZzzzz - I must be having my surgery.
I come round in the recovery area - don't know the time and don't remember much.
3.30'ish - I am back in my room, thinking I'm with it, all the time, getting more 'with it' haha
4.15'ish - My Consultant comes to see me....
Everything went brilliant, we have clear margins, there was no spread to my lymph nodes, the TARGIT IORT Radiotherapy is all done.
My cancer is now removed and my radiotherapy treatment is all completed.
My recovery; it all went so well, I am truly blessed, I have had no pain, maybe if I try hard to moan, I could say, I had the very occasional slight, only slight twinge from where the lymph node biopsy was taken - but nothing, honestly, nothing to complain about.
I was expecting massive amounts of bruising - virtually none.
My left breast; is now smaller than my right breast, I have a very fine 3" long scar, the area is hard to the touch (I'm told this is normal and will soften with time). There is 'no dent' - I had expected to have a 'dent' on due to the size of the tumour. I am over the moon.
Going forward.... from 'oww Whats Happened - to 5 weeks later I've had my operation and my treatment is finished' (apart from the daily tablets). I can't believe it and for anyone else reading this that is suitable for this type of treatment, you could have this all done in less than a couple of weeks.
I follow most of the post on this forum and many times I have gone to write 'What Happened' and where I am now. When I looked searched for TARGIT IORT treatment there are no posts on here, this makes me sad, maybe no one knows about this treatment or like me, at first are in such turmoil. What I do know is, I have felt very blessed to have been able to have this treatment, I have no regrets, I feel humbled and I'm not sure if this is the right words, maybe a little embarrassed that I have selfishly 'stepped outside the box' for my treatment - please don't think I have lots of money, a lot as gone into getting the money together to have this treatment - I will say, I do not regret this choice I was lucky enough to be able to take, not one bit.
My initial treatment on the NHS was fantastic and I could not knock them - they just would not give me the two treatments combined and, as it looks they don't want it to be available to us in the future - I really hope this is not the case, this type of treatment needs to be available to all suitable woman.
For any of you still reading this, 'Thank You', I hope my experience can help xxxxx
Sending love and hugs to everyone xxxxxxxx
Ps. I am not medical qualified, these are my own thoughts anyone considering any form of treatment should make their own enquires to the various options out there.
I am on this trial. Haven’t read the report but I had radiotherapy at the time of my lumpectomy. Apparently had about 45 minutes. My surgeon had asked if I would be willing to take part which , of course, was a no brainer!!Â
Don’t know what else it will entail, all I have been told was the radiotherapy at time of surgery, taking letrozol and monitored for 10 years rather than 5.
I will have paperwork to complete over the years. However I will still have radiotherapy when chemo is finished but have been advised only 3 weeks instead of 4/5.i just think this amount of radiotherapy at surgery is such a boost it can only be good. My surgeon advised this has been trialled in Germany with good results, why are we always so far behind???
Good luck everyone whatever your doing and however your feeling, the only way is UP!!
Xxx
Love Edwina xx
Back here again for hubby diagnosed with oesophagus cancer - Sept. 2021 
You’re allowed to scream - You’re allowed to cry - But do not give up
MAMMOGRAMS save lives, I'm the proof!!!
7 rounds of chemo, finished 30th May 2018. 15 zaps of radiotherapy, finished 26th July 2018.
I Survived .......... Sadly my hubby did not.
