New diagnosis my wife received yesterday, I’m a husband looking for any support from anyone

Hi @TonyBlue - nice to "meet" you, although I wish it had been under better circumstances. 

I don't really know what to say to your questions as I'm a patient, not a partner. There is a relatives group on here which you may find useful. community.macmillan.org.uk/.../family-and-friends-forum

I understand your fear because of your family history with this, but the treatments are so much better now, They can do so much more and women are living for longer and longer and, in many case, completely cured of it. My very first diagnosis was 17 years ago and I'm still here.

From the patient's perspective: what I found most useful was when my husband ran telephone interference on my behalf. After a chemo treatment, you really just want to snuggle up with a ginger ale and a book but every relative you have ever met (and many that you haven't!) will phone up to see how she is. It's very tiring having to deal with it all - I very much appreciated my husband answering the phone and telling everyone I was OK but I was asleep. I could then ring them back at my leisure (or not, in the case of one or two of them!) No matter how close you are to your family, there ARE times when you wish they would just leave you alone for a while, especially when they start ringing up with miraculous and dubious claims of cures they've found on the internet. The first time I had chemo, they didn't leave me alone. This time around, we knew what to expect and my husband took charge of updating the concerned and the nosey. 

I was also eternally grateful for the "dishes are done - here's a cup of tea - sit down and relax" routine. Finally, scents during  chemo can be quite nauseating so if you are a fan of particularly pungent aftershaves or shower gels, she might appreciate you losing them for a while. 

As for the insurance - I have no idea what to say. I have it in my head that you get a private room with insurance - I am not sure I would have liked that during chemo. I found that meeting the other ladies every three weeks, swapping tips on  the various side effects and just knowing I wasn't alone was immensely helpful. For surgery, I might have liked the private room - I was very young (32) and the ward was full of 70 year olds making 70 year old bodily noises all night and huffing and puffing at my wanting the light on to read until all hours (8.30 pm actually....!) 

Anyway, I'm sure my rambling has not been very useful, but I didn't want to read and run, as it were. 

Thank you so much for replying and yes it was very useful! I rang the Macmillan helpline earlier and the nurse gave me lots of good questions to ask the oncologist too.

I was really cheered to read how long ago your treatment was and that things seem to be ok for you, it’ll be a very tough year I think. Thanks again 

Hi @tonyblue (sorry it won’t tag, don’t know why!) and another warm welcome to the forum. Great advice from , just wanted to add that my mum also died from breast cancer, over 40 years ago but treatments have moved on hugely in recent years, let alone decades. My cancer sounds similar to your wife’s and yes, hormone receptive ‘beasts’ are regarded as very treatable. Plenty of stuff to throw at them and then hormone therapy as ongoing treatment to keep them away. 

Don’t forget yourself in all this though - it sounds like you’re a great support to your wife but make sure you take care of yourself too. And accept any help going, not that it’s easy in Covid times. Re chemo, there’s a special monthly thread in the Diagnosis and treatment section here which should be useful both for preparation and during treatments. 

We had a Community Champion, @dreamthief, who was here till recently on behalf of himself and his wife. I’ve tried to tag him but it’s not worked either! Anyway there are lots of us here - take heart from the fact that we’re such a mix of new, recent and been here for years, proof that treatments are improving all the time! Love and a hug to you both, HFxx

Thank you some much HappyFeet1, Im glad I joined here as it’s been really helpful. I sometimes feel like this was always inevitable and history repeating itself has actually happened. Just hoping with everything that’s happened since then that the outcome will be far better x

I understand your stress.  I lost my mother weeks after her colon cancer diagnosis in 1988 then in 2012 my sister a month after being told she has a brain tumour. So in 2015 when I was diagnosed I thought it was my turn as things come in threes don't they !  I'm 5 years clear.  Treatment has moved on so much x

God Carol that must have been so hard...and so frightening too, so glad you are doing well. It’s hard not to go back to what we experienced and just assume it will happen again. I sometimes feel stuck as that 17 year old and it definitely affected me in not great ways x

Hi

When I had my treatment it was all on the NHS.  My diagnosis broadly the same as your wife's (see profile)  I had many instances of speaking to others who were being treated privately who, due to the facilities at the private hospital were having to come to the NHS hospital anyway (this was for chemo & rads), they also told me that the private hospitals can be very tight about giving out drugs and tend to scrimp if they can (not give the best ones) whereas these are more readily available in the NHS - particularly useful if any side effects from chemo or special bandages that may be needed post surgery that the standard meds can't resolve/your policy won't cover.

Am sure it differs between hospitals so probably best to do your homework (as you're already on with) with private medical company and if possible speak to someone (?) whose been through the same with your insurance provider as I've found that they're very cagey & vague regarding what they'll do for you/what's covered/how much it may cost you etc.  Beware of what may not be covered by insurance as you don't want any nasty surprises.

For my mx I was only in for the day and on return from surgery it was a solitary room anyway so no wards for me but everyone responds differently to surgery.  As I didn't want to wait 2 years for reconstruction (it was delayed after mx) I decided to use my private insurance (through work) and go privately for that, that ensured I got the recon in a timely fashion but its a real palaver as you need to effectively project manage the hospital as well as the insurance company - at least with the NHS you're only managing one bureaucratic nightmare!  I also did not want to be on a ward whilst in hospital for 3 nights (sleep very important to me), and given that most of the time my bum was hanging out of the glamorous gown it was a blessing too!

Also if you start down the private route it may be difficult to get back into the NHS system for treatment ( I was told it was impossible but know of others who have transitioned).  Also FYI as your wife has private insurance if you go the NHS way your insurance company may (as mine did) pay you for each chemo, rads and hospital stay as you're saving them money...made myself £1,500, nice to have despite the fact that you need cancer & a diagnosis to get it.

If you can get an idea of timescales with NHS treatment I'd do so as that's what I'd do in these pandemic times, in my initial meeting where I was formally diagnosed the oncologist outlined these and would, I'd hope, be able to give you an idea of possible delays to enable you to determine whether private is the best route.

Good luck to you, your wife & boys.

Sam

Thanks Sam, that was fantastically helpful! Didn’t consider half of what you mentioned. 
I think we may be leaning with staying with the NHS at the mo but I guess we need the conversation with the oncologist to see what he thinks too.

I really appreciate you taking the time to reply to me - thanks so much again.

Tony x

Hello my wife was diagnosed 4 weeks ago had operation last week I am finding it really hard myself the n h s hospital have been very good we never ever thought this would come our way your not alone hopefully things will get clearer in the next week or two

regards 

Kevin 

Hello ,

I am sorry you find yourself here and most of all your wife is blessed to have her husband looking out for her.  I would of loved this type of support, but, my hubby supported me in many other ways with it.  However, without you realising it 'this part is possibly the hardest part' - the finding out what can happen, what is available, do you step outside the box, etc etc - once all this is covered then the rest seems so much more straight forward.  I say this, I was blessed to avoid the chemo - so a slightly different route for me.

My 'two penneth'..... I didn't have have medical cover - I so wished I did, I used the 'rainy day money' and at that time it was pouring, so did the best I could.

For one reason, if this option is available to you, then this would be my reason for using the medical cover.  Have a look into a treatment called "TARGIT IORT" there are a few criteria that need to be met to be able to have this treatment - one being 'how many 'C' are there'.

I believe this treatment is not available/suitable for anyone having a mastectomy. 

This treatment is a combined operation of 'lumpectomy' also called 'wide local excision' and then 'at the same time' the radiotherapy treatment is given' - straight after operation, the radiotherapy is given 'internally' in one go.  Thats that treatment finished.  

Meaning, no waiting for operation site to heal before starting radiotherapy, no daily trips for 'external' radiotherapy for around 3 to 4 weeks. Normally once a breast has had external radiotherapy it can't be given again - whereas with internal radiotherapy there is still the option for external radiotherapy, these are just a couple of the benefits.  

This treatment was given limited approval approx. 3 years ago to be used on the NHS - however there is a lot of 'red tape and internal wrangling' that this treatment is very rarely offered.  When it is offered there are only a small number of NHS hospitals that can give this treatment, again, this can alter how a person thinks about having the treatment.  Sadly, we do feel very vulnerable at the start of this journey... rollercoaster ride that most will go along with wha the Doctors and Consultants say without any knowledge that this treatment is available to them (if meeting the criteria).  

I found out about this treatment by accident...... My BC was on my 'left' side and I had read that radiotherapy to the left side can cause problems to the heart (not always and can be avoided with breathing techniques used) - I was looking into the 'Deep breath holding' radiotherapy available on a Genesis machine (not fully sure if this was the name of the machine or the company).  Many of these Centres are located within the grounds of Private Hospitals.  I was looking into this and then came across TARGIT IORT - my world changed then.

Yes, I was so scared, but, I was scared anyway.  I felt so wrong - yet so right looking into this.  I contacted the Proffessor's secretary and explained my situation - I was waiting my operation (think it was 3 or 4 weeks away at the time, whilst awaiting operation due to my fears of growth, I was placed on a tablet called Femara (clinical name: Letrozole). 

When Femara is given before surgery to shrink a larger breast cancer - this treatment is given to weaken and destroy breast cancer before surgery are called "neo-adjuvant treatment".  

Treatment before surgery isn’t routinely used to treat early-stage breast cancer, but may be used if the cancer is large or aggressive. When neoadjuvant treatment dramatically shrinks a cancer, lumpectomy instead of mastectomy may be an option for some women. 

Back to TARGIT IORT - from my initial phone call on:

Thursday 5th, I had an appointment made for a meeting in London on Monday 9th to 'see what I thought and for them to see if I was suitable'.

Friday 6th I collected a CD from my local hospital of my NHS mammogram. (I think this may have being emailed too - I can't remember now).

Monday 9th appointment, looking at CD, had Mammogram and ultrasound, met my Consultant/Professor .... an incredible, humble, kind, gentle, gentleman whom is one of the founding pioneers of this treatment.  I had the stainless steel 'marker' put in (this is incase the BC should shrink, they know where 'it' is/was).  This is done in a similar way to how they take a biopsy along with using the ultra-sound to guide them. I had measurements taken, it did show that for the few weeks I had already been taking the Femara the BC had started to shrink!!

Tuesday 10th there was a multidisciplinary meeting about me, to discus suitability, treatment etc.
Tuesday 10th - 7:30pm phone call to say I was suitable and I could have operation on Friday......  13th !! if I wanted..... 

I did want this, as scared as I was this was the right choice for me, I could sneak to London have operation and radiotherapy and be back home and my dear 88 year young (at the time) mum would have no idea!! ..... All I would need to let my mum know is that I had found a small lump and it was suggested it would be of benefit to have it removed..... of course mum would hear I'd had lump out when I next went to mums and would be after operation - so there would be no worrying - I really don't think I could not of hidden the daily traveling to get the radiotherapy treatment.

Thursday 12th - Travel to London, from now I am classing this as a holiday, I am 'first class all the way', trains, taxi's, etc 'this is my time and I want it as un-complicated and stress free as possible.  We arrive in London, I have various blood tests, ultra sound, mammogram,  I can't think of what it was called the 'radio active injection' that shows where the sentinel nodes are, this location is then marked on the skin (towards under-arm area) with a new device called a 'permanent marker' pen (I joke, but they did do this) then covered the area with a plaster so as not to rub off.  Can't think what else I had done.  I then stayed overnight to save travelling back and forth.

Friday 13th - Morning - Met my Anaesthetist, go thought various questions, etc. a little later.... Operation time (I won't go on about my superstitions - thankfully, I had a few signs to show me all is good). I make my way down to the theatre.

I had operation with combined radiotherapy.  I had said before operation - if you need to take any extra out to get clear margins - please do (this again is another stumbling block with the NHS they are limited to how much tissue they take out - due to the fear of protections for 'taking to much'  (I would sign a disclaimer if need be to avoid the risk of needing further surgery).

Friday 13th - afternoon, operation and radiotherapy done.  Told I free (I still won't tempt fate by saying this).  All is over and done - now have to continue to take the tablet for 5 years - maybe 10 years.  I stay in hospital overnight - at my request, I didn't want to risk going home - in case of any problems.

Saturday 14th - homeward bound - yahhhhy.

I'm sorry if I am waffling on here - but, the information may be of use to you and your wife, or even parts of it may be of help - the main thing is you will know about this treatment 'before' and if its an option or if its not 'at least you know'.

I wished I had medical insurance as all this would of been covered.... I had to paid - at this time the treatment had not been fully approved for NHS use, although I was told I could wait - as it would be a matter of months.... I didn't want to wait, I was tempted, but my anxiety wouldn't let me.  The peace of mind I had was so worth it, don't get me wrong, I was so scared doing this as I was stepping away from the NHS - however, I was reassured that at any time I can and am still with the NHS too.  

My final words, your wife many be suitable for this treatment having chemo either via the medical cover or on the NHS and then the operation private or if you are near an approved NHS hospital have treatment there.

I think it would not hurt you to phone my Consultants Secretary to see what there thoughts are 'there is no pressure' honestly, the Consultants work within the NHS.  You just learn what is out there.  For your wife and for many of us, we are pushed onto this rollercoaster of ride and don't get chance to stop and ask questions or see what's around. 

I hope this has helped give you some more information to look at.

This is the site which gives some basic information:-
https://www.targit.org.uk/intrabeam-targit-iort-information

This can give a guide to suitability - but, I would still suggest phoning:-  
http://jayantvaidya.org/breast-cancer-surgeon/targit-decision/

I will also tag Dedalus in to this post/tread, his wife has had treatment not that too long ago.

Wishing you all the very best and I hope I've helped 'a little'.

oww and if your wife is like most of us, she will be going though some terrible emotion times - from quiet and calm to exploding... and that's putting it nice.  Once a treatment plan is worked out a lot more will come together - this is part of the worst time, this and along with results.

Take care and Stay Safe xx