Hi all
I’m feeling at the end of my tether today- completely desperate+ terrified about what lies ahead for me. I have a ct scan tomorrow to look for the mets my onc has said are now inevitable so I’m naturally stressing about that. Also my skin mets are growing again despite major surgery which reoved them with clear margins. I’m having rads but noone seems to be in any hurry to get started… except me!! It’s been 6wks + haven’t even had rads planning meeting yet- can’t help thinking my onc in no rush as he thinks I’m going to die anyway. If they don’t get cracking I’ll be back to sqare 1 with the skin mets + op will have been a complete waste of time. They’re tracking round my side to my back + if left much longer god knows how bad they’ll get 
I’m thinking of getting my bcn on the case 1st thing tmoro to find out exactly when rads will start + if it’s still a few wks off as I fear, then I will kick up a fuss as I’ve been more than patient so far. If necessary I’ll look into utilising our private health to get treatment underway asap. Is this not all stressful enough without oncs dragging their heels + pushing us to our limits? Think I’ll be an alcoholic +/or Valium addict if I don’t see some progress + get some overdue good luck this week.
Just needed to share
tina x
Hi Tina,
I have read some of your other posts and meant to reply earlier, sorry for the delayed response. I do feel for you, as the waiting is the worst part and once something starts to happen you can just focus your energy on staying well and enduring the treatments!
I hope that your CT scan goes well and nothing extra is discovered! I do think you should speak to your BC nurse, as over 6 weeks is unacceptable, particularly if you can actually witness the skin mets spread. You shouldn’t have to kick up a fuss, but it does seem as if this is what you might have to do…GOOD LUCK!
Take care Nicola xx
Hi Tina
Keeping my fingers crossed for you. And yes, kick a*se!
Take care,
Alison xx
Hi Tina
I really feel for you, and if I were you I would definitely use the health insurance, and do it now. There are many advantages to going privately - and being seen quicker is definitely one of them. You will have longer appointments, probably get your oncs private mobile, and most importantly have access to some treatment options that may not be available on the NHS. You can probably see the same onc, just in their private clinic. Please make a fuss and get yourself seen quickly.
finty xx
Tina, how awful to have to wait wait wait - sounds as though your onc is nothing short of negligent. I would push as hard as you can and if you don’t get a response asap, use the private insurance you have.
It’s unacceptable to leave you with visibly growing mets and do nothing about booking you in for treatment. I really feel for you. This disease is a terrible thing to live with even when we’re getting adequate or good care.
Hope you get some understanding and action from your bcn tomorrow. xxxx Jane
Hi Tina,
I’m so sorry that you have to wait this long. The worry before scans is understandable. On top of what seems to be “no one is paying attention” has just made the situation worse.
I use private healthcare insurance, and even that, every time before scans I have to keep on ringing them up about appts ect. It’s not how things should be, but I’ve learnt that unless we make a fuss, they just don’t hurry up. They’ve got lots of patients to look after, so, if they can put it off, they will!! And I’m talking about private here. I can’t imagine how much longer you have to wait on the NHS. You keep ringing them and kick up a fuss!!!
Just to warn you, I had to wait for 1 week after my rads planning. The wait is usually 2 weeks and I wasn’t happy about that, so they kind of fast tracked me because I moaned!! The proper rads will start tomorrow.
All the best with your CT scan tomorrow.
xx
Hi Tina
So sorry to hear you are feeling so distraught. I too have skin mets, they were diagnosed at Easter 2008. I too had them removed, and then radiotherapy but they returned (after about 8 months if I remember correctly). I was diagnosed with lung mets in June 2009 but as yet I have not had any symptoms of that. I don’t know why your Onc is so convinced of further mets, but if he is right, it doesn’t mean you will be leaving this world anytime soon. I was given capcetabine/lapatinib recently but it didn’t do anything for me, although I know it has been successful for a lot of ladies on here. I am now trying Vinoralbine and have a CT scan next friday to see whether that is working, but even if it isn’t I will be trying something else, so don’t despair, I am sure you have a lot of options to try yet. My skins are all across the site of my mastectomies which means I have to wear tops that are fairly high in the neck which is so annoying to think that cancer is dictating what I wear now. I see my Onc privately through my husbands works healthcare scheme and know I wouldn’t have got lapatinib without it so I would recommend going private if you can. You also don’t have to wait ages for appointments and then for hours in NHS waiting rooms, you go to nice posh places that don’t feel like medical places and are treated like a human, not a number. Being private also means I see the same Onc every time so he knows me well now.
Hope you get that overdue good luck
Linda
x
Hi Tina,
your oncologist is an insensitive sh*t who deserves a kick up the backside. Given the treatment you have had at your oncs hands so far,with the delays and the pessimism, i would certainly sort out the private route, but in the meantime i would kick off like mad tomorrow with the hospital to push along your rads. Phone your bcn, your oncologists secretary, the pals at the hospital and the radiotherapy department to see if your name is down yet. Is there any reason you havent gone private from the outset, as if theres a problem going private then i would enquire about changing your oncologist under the nhs.
I am under christies and my oncologist has been fabulous. I have my rads at oldham as its a brand new satellite unit. If you go private and to christies then have a look at the new oldham unit on their website as you may wish to go there, though am unsure if they do private there, though i know my onc also sees private patients.(I will pm you his details) The Oldham unit is not far off the m62.
Good luck with your scan, thinking of you and your family
Vickie
Hi Tina,
Just a short post to say that I am thinking about you and wishing you well. I would definitely get wheels in motion re private health care asap. I use my partner’s work Bupa cover and recommend it. It is unfair and infuriating to have to wait so long for your treatment.
All the best,
Sarahx
Hi Tina,
Good luck for today, sending you all my good wishes.
I would use the private ins, you are far from satisfied with your onc, perhaps this would allow you to change?
Think I’ve told you that I always ring the hospital, either for appointments or results, that way I know they can’t forget me.
I did this at my initial secondary dx and actually started chemo before my original referral had even been booked. I rang every day for an update on apps, managing to get a cancellation slot for onc and CT scan.I did the same re second batch of chemo, starting it in one & half weeks rather than three weeks.
It’s hard work, but I find it gives me a focus at a time of pure panic, plus a feeling of some sort of control.
Are you getting your scan results today?
Hugs & love, Sandra x
ps/ pester,pester,pester!!!
Thanks for all your replies ladies 
sorry for the delayed reply but it’s been a hectic week of hospital appts + that combined with a 17month old rascal of a son (!) has kept me mad busy.
I texted my bcn Sunday night + explained how frantic I was feeling. She is fantastic + phoned my rads onc at 9am Monday morning + explained how desperate I was to get started. He was great + booked me in for formal rads planning today (saw him yesterday too). The wait to satrt rads is early November but he has pushed the team to get me in asap so I’m awaiting a phone call tomrrow to confirm whether I’m starting late next wk or start of following wk. I’m 33 next Friday + with a bit of luck will be started by then. The team were quite shocked to see my scars + to hear what I’d been through + it looks like I’ll be a bit of a challenge for them! The room was full today of people discussing the best + safest way to treat the whole field. I was bloody freezing it was so cold in there! I’m expecting around 5wks of rads including boosters.
I had my repeat ct scans Monday + my wonderful bcn stalked the radiologist constantly so I got my results weds morning. Thankfully there was no nasty developments- lungs+ liver fine etc. Felt like I’d won the lottery Think it’ll be jan before I’m scanned again now so were hoping we will be able to go to Canada at Xmas rather than cancelling the holiday we’ve looked forward to all year. Fingers + toes are crossed!!!
You ladies are all lovely + I appreciate all your support + advice.
Will keep you posted how things are going
love Tina xx
Hi Tina,
So glad you’re getting some action at last. I hope it works out well.
My best wishes,
AlexG
Hi Tina
This is the best news Ive heard in yonks, Im so so pleased that you finally have some good news and can get going. Just feeling that someone is taking control and getting things moving helps enormously. The CT scan must have also given you the boost you so desperately needed. I had my 2nd cycle of chemo today, feel ok but a bit icky so will take my tablet in a bit. Everything crossed for you, keep us posted.
Debs xx
fabulous!
Hi Tina,
Fantastic news re the scan. I’m so pleased for you.I agree with debs about feeling better once things are under way. Have a great weekend now you can relax a little.
Sandra x
Tina, that is fantastic news. I’m so glad you don’t have more to contend with and the rads is almost underway.
I had my lymph node and lumps on scar removed today so am in good spirits too! It’s nice to share a little high among all the horror. xxxxx
Hi Tina
That’s terrific news, I’m so pleased for you.
Alison x