CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Hi lacies. Leslie sending you lots of healing thoughts and love. Chewing MDT notes is something I've never thought of asking for but now you mention it...! Frustrating that you have to wait - and I suspect you may have to chase. Healthcare is still in the dark ages in some ways, although all my GP stuff I can now see online .

Waving to all.

Hi everyone- I've not checked in for a while but do keep popping on to see how everyone is doing. I'm fine at the moment but been thinking about all this business agin as my MIL had a biopsy the other day as she has found a lump. I am praying for her and the rest of my family that it isn't cancer as we really don't want to be going down that road again so soon - she gets the results on Tues!

Waving to Royal, and sending thoughts to Chewing and Leslie

Fresta best wishes to your mil. Hope she gets a good result
Argy I've been told my MDT notes may have to be deciphered before I can read them I'm just a bit perturbed. Following my new biopsy giving me some treatment options I was hoping that there would have been a decent discussion about me. All that's been recorded as an outcome is 'disease progression'. That doesn't sound like an outcome or treatment plan to me!!

Just popping by to say hi and send love to all. We've been struck by chicken pox (well, the almost 2yo - really hoping the baby avoids it!) and am still in treatment limbo but thinking of you all and wishing you all well

Argy, there’s been and are some trials running to see if Metformin – a drug given to Stage II diabetics – can reduce recurrence. There’s some evidence, mostly from diabetic patients, showing that those taking Metformin have better outcomes than those not, so the trials are now mostly looking at non-diabetics. It’s a fairly safe drug to take, but because it’s only licensed for diabetes, it’s only available on private prescription. I will discuss it with my GP first. There are other trials running around aspirin too.

Lesley, hope your recovery is going well and you’re comfortable.

Aww, GreyCat, hope your household is doing ok with the pox!

Chewing, when I asked for copies of my pathology reports my surgeon said they were mine and more than happy to give them. I haven’t asked for my notes, I tend to just take a look when the nurses leave my folder lying around! That’s rubbish that you have to pay and wait. I know it feels like yet another thing to do when you’re not feeling that great, but I think I’d be asking to meet with the general manager/chief exec of the hospital as soon as possible. I’m sorry you’re having issues with sub-standard care as well as everything else. Is it something that MacMillan could support you with? Have you had one of their holistic needs assessments? Sorry for the questions, I really don’t want to add any pressure, trying to be helpful! Don’t reply to any of this if you don’t want to!! Obviously I am not a doctor either, but I think I’d be asking them about other HER2 treatments, not just Herceptin (I’m HER2 too). PM me any time if you think I can help of just for a chat.

Fresta, hopefully your MIL will get clear results.

NHS Integrative Hospital appt was sort of interesting and a little helpful. The short story is that I’m going to do their 10 week mindfulness course, have mistletoe therapy, and maybe have some acupuncture too. It’s used a lot in Europe, there’s some evidence to show it works, but I’m fairly sceptical. However, it won’t do any harm, and if there’s a chance it can help I’m up for trying it.

My onc is still refusing to refer me for a bone density scan. Not sure where I go next with that one, but I won’t be going away! Also the good news – last week almost all of the cold cap machines were broken. The nurses were great in swapping the cap between two partially working machines for me. After a few emails and bit of kicking off on FB, they were all fixed yesterday! Some of them have been lying around broken for over a year apparently and none have been serviced in three years! The CEO of the charity who paid for them along with the manufacturers picked it all up and got it sorted - they were horrified to hear about it. Happy me, happy nurses and more happy patients who can use them now!

Right, I’ll stop now, and wish you all as nice a weekend as you can have.

Yep Flippy I would also agree about other Her2+ treatments in addition to Herceptin for secondary cancer - in particular Pertuzumab. That is hard to get for primary apart from a restricted number of cycles for neoadjuvant treatment but should be funded for secondary.

Love to you all

Hi Flippy I have had no contact with Macmillan at all so far. Will have to look into holistic assessment.
@sillydog My London specialist recommended Pertuzumab alongside Herceptin and Docetaxel but I have been told it is only for primary cases and I could not have it If anyone can find any guidelines on this I would be very grateful.

Hi all! I haven't been on for quite a while so I'll give you a my potted history. Im 45 and was diagnosed in Sept 15 with mixed lobular/duct. I had a mastectomy without reconstruction; SLN came back positive. I was hormone positive, HER negative. I had 3 rounds of EC, followed by 9 weeklies of Paclitaxel. I then had radiotherapy on the remaining lymph nodes rather than opting for a full clearance. Im on Tamoxifen. I went in yesterday to have my ovaries removed as I was pre-menopausal before being diagnosed. Feeling slightly sore today to say the least! I didn't cold cap and my hair has gone from dead straight to afro, which is very strange...

Chewing, I am disgusted by the way you are being treated! It's bad enough that we all have to go through this shit without doctors/ hospitals making things worse. Can you contact your nearest macmillan nurse and get her on the case. Mine was very pro-active and a real lifeline when I was diagnosed. Are you somewhere quite rural? Sorry if I'm prying but it makes me very angry the way that our treatments differ so much depending on where we live.

Daxaki, regarding the double mastectomy, I did ask to have both breasts removed buthe they told me that it was unnecessary and so they wouldn't do it.

Fresta, how are you? Think we were diagnosed at the same time, if I remember rightly.

Leslie, you are amazing. You give so much to everyone when you are going through so much yourself. I hope you are feeling a bit better after your op.

Sorry to see so many new names, but at least we have each other.

Love to everyone.

Flippy have you looked at care oncology in London for metformin etc.
I use them, very good.

Hi again everyone
Chewing , the treatment your London specialist recommended is exactly what my sister had and she has secondary BC , she is in a trial which i will find out the name of so you could ask your hospital but she is in the Midlands , the trial I believe is about the way the drugs are given not the combination , she had to have a port so they can be given through that and was not allowed to cold cap as everyone has to follow the same regime and there was lots of tests in the begining to see if she fitted the criteria
I did use the cold cap but have bald patch now lost so much hair , have second FEC next week so will see what happens if its worth carrying on
Hope everyone has nice weekend

Hi all - sending hugs on this beautiful spring day.

Flippy that's really interesting thank you. My nosiness was because I work in pharmaceuticals and am always interested when well established drugs start being investigated for other conditions. I hope you can find someone to prescribe it for you if that's what you decide.

Chewing like everyone else I feel for you. It seems like you're having to fight for things unnecessarily and it's so much harder to push when you're feeling vulnerable. Perhaps a Macmillan nurse could be a useful advocate - I don't have any experience of them personally. The concept of having to decipher meeting notes is just bizarre - worth a complaint in itself.

Leslie I do hope you're on the mend.

Leslie, just wanted to add to ted good wishes. I hope you're not too uncomfortable and the surgery has gone well.

Good morning lacies.
Leslie, hope you are on the mend and being well taken care of.
Fresta hood to hear from you. Wishing your MIL the best. Hope the news is good.
mrs sorry did you say you had a check up coming up these days?
My cough is still here albeit not as hacking now. The lower most ribs on my affected left side are sore and I am not sure if it is due to the cough and cold or if it something sinister..I do not want to go see my doctor..was glad to be away from hospitals for this short time..listen to me sounding like a petulant child..sigh. Seems there is never going to be total respite.
Hope you all have as good a day as could be.

Chewing, it might be worth giving Breast Cancer Care a ring about guidelines for Pertuzumab and other HER2 treatments. They were able to find guidelines for me easily and send them. What are your options for transferring to another hospital/oncologist?

Useristired, thanks for that, I'm in Scotland so a bit far away for that clinic unfortunately. Do you mind if I ask what dosage they have prescribed you, and are you taking anything else other than metformin from them? Thanks again!

Royal, understandable that you don't want to go to the doctor - do you have a nurse that you can call for a chat? I hope it's not something sinister.

Hi royal, yes I have my 3 year mammogram on Tuesday morning. Trying to enjoy the weekend and forget it for now. It's our 29th wedding anniversary today, we've been out for afternoon tea.

Could your rib pain be anything to do with rads side effects? Perhaps it's a bit too low. My rib under my affected breast occasionally gets painful. My bc nurse said it's damage from the rads and to apply ibuprofen gel for several days, that seems to get rid of the inflammation. But if you've been coughing badly it could be that. I understand the fear of something worse though.

Leslie, how are you doing?

Hope everyone else has managed to enjoy the sunshine a bit.

Evening all - hope you've been enjoying the sunshine.
Mrsrhod cream tea sounds lovely. Good luck for Tuesday.
Leslie hope you are recovering well
Flippy that's a good idea - I'll give them a call tomorrow. Still weighing up moving hospitals. Have already had 3 oncs where I am so could do without more changes but need to consider what's best for me.

Flippy, they do phone call consults.
I'm taking all 4 of their protocol and also other things independently.
Are you on dreaded fb? There is a very good page on there with people who have much more knowledge than me.
Pm me if you want the name of it, not sure if I'm allowed to put it on here

Morning
I spoke to Breast Cancer Care who were helpful but admitted that I was in a difficult position. I don't meet NHS or Cancer Drugs Fund criteria so my only option is private which is very expensive. They also suggested that maybe the drugs company may fund it but I have been unable to find a contact email so far.
I don't meet the criteria for any ongoing trials either as I have previously had chemo.
I might just give up and accept that the 2 drugs, although not as effective as the 3 together, are better than nothing.

Hi everyone
Hope all ok glad its sunny there , its a bit cold today here which makes a welcome change
I had second FEc today now lost 70% hair so have to get head coverings asap and not sure if I should keep going for the next round anyone got any experience
Chewing, i did PM you the name of the trial in case you can ask about it directly through my sisters oncologist or the cancer team there , this oncologist also does private too but I guess most do , they seem to here too,
I looked a bit on Breastcancer org in the USA seems a lot of knowledge on their site although sometimes a bit scary there is lots of support too
Leslie too, I hope you are recovering and thanks from me down under for helping keeping this support and information going , Its very helpful

mrs happy anniversary! Hope you celebrate in style
I don't know what to make of the soreness in my rib cage area. It has been a year since I had the rads. I suspect it is inflammation but can't be sure and the spectre of cancer returning or spreading is forever lurking. I might as well have it checked..so much for staying away from the docs and hospitals.
leslie i hope you are recovering well and being taken care of.
chewing you must be stressed out from all the thinking and decision making. I truly hope whatever you do get works.
Waving to everybody else.

Royal, I occasionally get sore areas on the ribs on the affected side and have done ever since my sentinel biopsy. The fact they are usually over quite a wide area, a bit like a bruise, and that the soreness moves around means I haven't really worried about it much. Also, having a cough can make ribs sore. Do you have cording still? My theory is also that the cords adhere to the muscles and tendons in the affected side- if I haven't stretched for a while I find my ribs feel sore when I stretch.

Thanks so much for the information everyone.

I'm seeing a new consultant tomorrow so I'll talk to him about Mastectomy options then.

Checking in briefly and sending love to all who need it.

My surgery itself was a huge success. They couldn't do it laproscopically as I had too much scar tissue and adhesions. But the new incision is right on top of the old one, so quite tidy. They're very pleased with the results and I've already had relief from my symptoms. My recovery has been a bit up and down though. I've hopefully turned a corner now. They were talking of discharging me today but I suspect they won't as it's quite late and no sign of any doctors.

So pleased for you Leslie

Yay Leslie
Hope they discharge you soon so you can relax in your own bed.