Advice please

Whereabouts are you ? In England I think I’m right in saying everyone will get annual mammograms and follow up for 5 years minimum, I have 6 monthly follow ups with consultant for 3 yrs as well as annual mammograms for 10 yrs, but that just the way he works.

I’d start with your gp, and see what they say, I’m sure they’ll be able to help.

I know nothing about blood tests at all so can’t help you there sorry. 

Sounds like a fabulous opportunity for you, depending on where your off to, I’d take out insurance as you’d do for you normal holiday abroad if it’s affordable. 

We are in Yorkshire and the care I have received has been amazing. I do get yearly mammograms but with triple negative spreading to bones, lung and brain possibly that wouldn't get picked up on a mammogram.

Part of me knows that there are no guarantees in life anyway, we could choose not to go and get knocked over by a bus. But in the UK we obviously have more security than if we were travelling footloose and fancy free.

Just having a panic day I suppose 

hi

I'm 100% with you on this point. 

I felt I'd just fallen off the end of a conveyor and I was treated at what's supposedly one of the top hospitals. 

They said I'd need an ultrasound and a mammogram each year for 5 years and that was it, but I've had to chase for even the ultrasound each year, which they've admitted is down to lack of staff.

I looked into private health care since I'd had to pay for a private screening to get a proper diagnosis and at that point the Onco arranged a full body bone scan and a chest, abdomen and pelvis check but still nothing checking my head. I had Her2+ which allegedly prefers to spread to the liver and lungs but that's only the stats. The next year they agreed to scan my head but only went to my ears, which seemed more than a little petty. 

Now I've ticked the box for going a couple of years without any symptoms or investigations I could, if needed, be treated privately and have the luxury of longer consultations and as many tests as they recommended, no tests are without risk, so that's always within reason.

Most medical staff say there's no such thing as secondaries without symptoms but a few hours reading some of the threads on here suggests otherwise. Brain mets don't always cause blinding headaches and surely a smaller one is going to be easier to deal with than a large one. My GP said the outcomes are the same, hence the lack of scans. That's not a conversation for the faint-hearted. 

Blood tests were being trialled at the Marsden just before I was treated there. Also known as liquid biopsies or circulating tumour cell tests.

https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/circulating-tumour-cell-ctc-sampling-study/

I can't remember who it was now but one lady here was picked up post chemo with a CTC test and sent back for more treatment, she was part of a trial. She wasn't very happy about it but it was a major step forwards for the science. 

There weren't any clinics in the UK offering tests but a quick Google suggests there might be some now. I wouldn't want to recommend one since I have zero experience. Germany, the US and Greece were the main centres, one lady had blood sent to Greece for checking. I cannot remember how she managed to arrange that. 

'circulating tumour cell tests UK' is the search term I used and you could have a chat with your GP

good luck

Carolyn

xxx

Hi Carolyn, 

I asked about Blood Tests for CTC's and my Oncologist said they give false positive and false negative results and only use them when they really feel they have some evidence of secondaries, so his answer to me was NO.  

I have recently been having pain in my Mastectomy site and felt a small lump towards the armpit on my mastectomy side, which I know hadn't been there for long as I examine myself regularly, I booked in to see my Surgeon and he said it was quite normal, their was in fact a lump but he wasn't worried, nor was he worried about the pain I described, he said it was Post Mastectomy Syndrome, when I looked that up none of my pain seemed like nerve pain ie it wasn't shooting, tingling or stabbing pains but continuous pain, he told me to use Ibuprofen Gel on the painful area and said nothing to worry about regarding the lump!  Well, I continued to worry so asked for another appointment (Private patient) he reluctantly agreed to do a Fine Needle Aspiration of the lump but insisted this was for my peace of mind only as he wasn't concerned, the result was it came back NO cancer cells detected but white cells showed inflammation, he said no need to follow on from this.  Regarding the pain he agreed to an US that was negative but the pain persists so he now has me on Lidocaine Patches, I'm worried and anxious, the last few days its been quite bad and I convinced myself on Friday its bone pain and the cancers in the bones.  Don't know where I go from here as he always makes me feel like I'm a not coping when in actual fact I'm quite tough and have a high pain threshold usually. He uses the term 'Overtreatment or Over-testing regularly'!. 

What I'm trying to say I suppose is as a private patient you still cant get what you want in terms of tests. I think its also down to luck with Consultants some have more understanding than others of the anxiety of having had Cancer.

I totally agree with you there are sometimes secondaries without symptoms until its too late, I worked in a Hospice and we had patients admitted who had only been diagnosed weeks before they were told they have months or sometimes weeks to live.  

This makes me sad. I do hsve a history of having to fight for treatment, when I was 32 I was having angina and they basically laughed me out of the surgery, only to call me bsck white faced..and Iended up have a triple bypass 1 year later..at 33. They kept saying I was too young. So to add to my panic today, I have developed lymphedema in lockdown so haven't seen a nurse with it, diagnosed over the phone. Some worrying symptoms yesterday so they asked me to come in today but instead of leaving with antibiotics I was checked over for thrombosis..scan tomorrow...and stupidly googled it....now even more convinced I have cancer. But trying to be calm hoping tomorrow brings good news.

I don't feel like we should have to fight for checks as I think sometimes we know its our own paranoia but I do think we know our bodies. Surely that one half a scan of your head costs just as much as them going all the way. 

If we do go travelling as its work based I get private health and always think that thst could of been why I was treated so quick. I was diagnosed abroad  and in a hospital within 1 week for full masectomy. I can't compare to here in the UK but I have heard so many stories where people have been put off and end up not getting trested quick enough. It would  be nice to see quicker diagnosis and more testing. I can't see the negatives in over testing apart from cost.

Thank you all of you for replying so quickly, only you all understand how it really feels. My mom didn't mean to but as I expressed my fears this morning she started telling me about her deck...they just don't understand the constant worry.  Thanks again! X

Hiya I'm from Yorkshire too. I finished treatment for triple negative breast cancer 11 months ago, and often find myself feeling "lost"

I think because i had a year of appointments and treatment when it was all over, rather than the relief i expected to feel i just felt alone. I even stopped coming on here for a while as i felt guilty feeling so sad and anxious when i no longer had cancer anymore. What a mistake, there are so many of us who feel like we do. 

The first time i returned to the hospital which was a few months after treatment had finished as i drove round the corner and down the drive i felt like i'd returned home. I started some counselling and attended the fatigue clinic a few times but found myself looking forward to it as i knew how much better i felt while i was at the hospital. I even use to stay and have some dinner because it is the only place where my anxiety disappears.

I'm very much like you as for aches and pains, i found a new lump last month, luckily the breast care nurses had me straight in for a check up and was found to be a cyst. Every ache and pain i wonder is it back and how will i know if it has. I only found out i had breast cancer because i was sent for a routine mammogram.

I have a follow up appointment with a breast care nurse next month, i've had my first year mammogram so they now put me onto the survivors programme, i have been told i can ring any time over the next 4 years but sometimes i feel i'm pestering or being paranoid so don't bother ringing.

Hope you're feeling a bit better, i think we all have panic days but lets hope they become less over time xxx

Hi

I’m so grateful to have this forum as so many times someone has posted about things that they’re dealing with that I can relate to. I finished treatment 13 months ago and was due to have my first annual check up this month but due to the current situation it has been cancelled. I completely understand why but I feel like I’ve just been left to get on with it.

I had a mammogram in January which was clear but like peterawake have remaining pain after my mastectomy. I’ve seen the plastic surgeon who doesn’t seem too concerned, had a bone scan, physio, followed the exercises, had amitriptylne  but it doesn’t go. I’m not in agony but it’s a constant reminder, I can’t forget for a minute that I had the surgery I did. It hurts across my ribs which at times feels like it’s stinging. My shoulder is tight and I have tightness/pain all the way through my chest to my shoulder blade. There’s no pattern to it, some days are better than others but it’s just a constant worry. I was hoping to talk to the cancer surgeon but I’ve no idea when that will be now. 

My appointment with the plastic surgeon has also been cancelled. My Diep flap couldn’t be completed and ended up with a skin sparing mastectomy.  I didn’t think a year on I’d still be like this and looks like possibly it’ll be another year. I’m not meaning to sound selfish, (I’m hoping you ladies will understand) and I completely understand there are more urgent/important things at the moment.  I’m still struggling with coming to terms with everything and as I’ve got my op to go i don’t feel it’s just going to help me move on yet. 

I really hope you get to take up the opportunity of travelling, it sounds amazing xx 

Lucy51 reading your response made me cry, sounds like we are both going through a similar thing.

I had a left side mastectomy with immediate latissimus dorsi flap reconstruction. I also had my nipple removed as the cancer was just behind it. I now have one firm small nippless boob and one soft bigger boob. I feel pain in my ribs, under my arm where the scar is from the reconstruction, stiffness in my back where my skin has fused to the muscle and stabbing pains in the boob itself. Pain in my breast bone which i think is caused by cysts, i have only started with these since my mastectomy. Some days it feels like someone is stabbing me with the end of a sharp knife. 

I was due a mammogram last month but it was cancelled, luckily??? i found a new lump in my new boob, when i rung my breast care nurse to tell her i had found a lump she made me an appointment to go in and have it checked. The registrar i saw was lovely and said he would get them do do me a mammogram while i was there. The lump turned out to be a cyst. I have 3 cysts now and they are really painful, i went to bed hugging a hot water bottle last night hoping it would ease them.

My other issue is the pain stops me from sleeping on my left side, which is my prefered side for sleeping, so i don't tend to sleep very well either.

One of the things i have found is who do i tell about these issues??? I speak to my gp mainly about the pain but they won't prescribe me pain killers because they say they didn't do the surgery. But i can't ring my consultant and ask for a prescription for painkillers. So ibuprofen and paracetamol is what i take but they don't always help. Like you said its like the cancer is gone we are no longer anybodies problem. 

On top of that people thinking that because the cancer is gone you're all fixed and tickety boo.

And this blasted COVID thats put a stop to everything, i think i had a year of fighting cancer now i have to keep myself and my loved ones safe from Covid, will someone just give us a break xxx

Big Hugs xx

gosh you’ve really had a tough time. I’m sorry you’re in pain from the cysts (very glad that’s all they are tho). Have they given you antibiotics for them? I really hope you feel better soon. 

It does sound as though we’re in a similar situation and I know we’ve both struggled with moving on from previous posts. I’ve just read your profile, I had my op 11/4/19 and signed off on 2/5. I didn’t have chemo or rads but now on LLetrozole which also adds to the aching.

I’ve spoken to my GP about the pain, as well and about the anxiety etc but only tried amitriptylne so far on the physios recommendation. It didn’t make any difference so agreed to stop as not likely to be nerve pain. The pain is tolerable but  it’s more that it never goes away and is not helping how I’m feeling. 

I was hoping that seeing the consultant would give me some answers. The appointment this month would’ve been the first follow up I have had so it’s left me feeling a bit frustrated not having any support. I’m really missing the little bit of support I had from the cancer centre I go to and my GP but since covid that’s had to stop. You’re right about friends and family. Sometimes I just don’t know what I want to say but I’m just very sad. Trying to explain that to your friends/family is really hard. I know they try to understand but telling me to just look forward, remember I’m better now doesn’t help. I’ve registered for talking therapies and am waiting to find out if they can offer me any help because I need to come to terms with what’s happened before I can move forward. 

Take care of yourself and I’m always happy to chat if you’d like to xx 

Reading everybody's responses makes me realise how we all suffer so much and all keep quiet. I don't like that "its just because of treatment". As it turns out my lymphedema wasn't lymphedema but after 3 weeks it was decided it was a blood clot. So upper dvts are quite rare...another thing to add to my rarities. I had a complete meltdown in the hospital as I was convinced my cancer had returned. The nurse at A&E was especially kind and organised a CAT scan which showed no issues. Was so relieved but 2 days later the hospital that I had my treatment at called and offered me an MRI. After me complaining we just get left. Turned out that the MRI wasn't for diagnosis but for my upcoming reconstruction and only of my stomach. We had decided though in December that that particular surgery wasn't the best for me given my history so I requested that they do a full cancer scan rather than that MRI and said I really didn't want reconstruction given all  the possible complications. I just want my other breast removed so I am not lopsided. The breast surgeon agreed to order my PET scan,which I had but nobody would discuss my results over the phone so an appointment has been made for me next week. So this is the longest ever 10 days. Keep thinking worse case scenario. Just hoping it hasn't returned but if it has that its treatable. I'm not ready to leave my children. We had planned on going abroad again on working contract and now feel like everything is going to be taken away again. But on the plus  side after all my complaining, they really have been good and have tested me properly and loads!