@sez 4 nights of sleep definitely not one to celebrate with a bench slap! Hope you feel a bit better for some rest even though it leaves the issue of what to do after that. Think we need nominations for a suitable action for letting off steam after being on the receiving end of unhelpful or illogical advice / decisions! …or a sort of room 101 for them.
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I’m open to suggestions. I saw something like that online before my diagnosis and it was a woman who’d been diagnosed with some hideous cancer and she smashed a cake when letting off steam after she got bad news. Just seemed like a waste of food to me (sacrilegious in my family). I won’t be doing that.
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Morning all
Thanks for all your good wishes re my first set of annual scans. I got given a mammogram and, because mammograms repeatedly failed to show up my cancer in the first place, I also got an MRI scan. I also got blood tests, a cannula which proved to be fine for the Zometa but not for the MRI, so then while lying on the table they tried to get one in the side of my wrist but failed so stuck it in the back of my hand. Lots of deep breathing involved at that point but it worked! I am seeing my consultant about this red patch on my chest at 1pm today. I don’t know what it is and it could be any number of things but I’d rather know than wait and see. I’m feeling a bit less energetic than normal so that’s probably the after effects of the zoledronic acid but we are off to Margate today for this Roger Daltrey and Ocean Colour Scene concert at Dreamland so I’ll need to drink some strong coffee and get on with it!
@jeml - I haven’t been given a CT scan which is something of a relief. I’m of the opinion now that if you look for something, you’ll find it!! And then all these little areas turn out to be wear and tear or old pleural benign nodules. The red patch appeared Sunday and got larger over the next few days. I’m hoping to be told it’s a bite but it doesn’t itch so who knows. Like you say, things that didn’t used to worry us, do now. Sorry you’ve been feeling so rough. What a great photo of you on the beach. Empowering and beautiful. So encouraging for women going into this.
Hello @dilly - Sounds very similar to my diagnosis except I had 2 positive lymph nodes so I empathise entirely about being referred for a CT and bone scan. They have to do this and it’s the very worst part of it all. The waiting is torture. I also had to have my nipple removed because of discharge which was my first symptom back in 2022. As @carrie5 said, treatment plans vary depending on your case and from one hospital/consultant to another, from what I’ve learned, so it’s impossible for us to know which way round they will treat you. It’s all a horrible shock but it’s one that we’ve all had and got through and countless other women will have to go through too. You will get through it and we will be with you. Staying positive is a battle so go into it guns blazing. Distraction is key. I let my head get the better of me the day before yesterday so I went to bed early, got up yesterday and made the decision not to think about my scans and red patch on my chest. I’m also going to Dreamland later today and I will refuse to think about them again. Cancer has given me enough grief; it’s not going to balls up my fun times. Easier said than done, I know, and I’m not lecturing. Make sure you have your support network around you and if you need a bloody good cry or scream and shout then that’s ok too. Also remember the Breast Cancer Now nurses on this website who you can phone to speak to about any medical questions who may be available when your medical team are not. I well remember the feeling that the news just kept on getting worse but then one day it didn’t and I got my treatment plan and I was able to fight back. You will too, Dilly. Sending love and strength.
@carrie5 I have a week to wait for results but hoping that my consultant can give me some peace of mind about the chest red patch today. Like I say, I refuse to worry. I’m going to go and have a good laugh at Roger Daltrey singing Talking 'Bout my Generation at the age of 81!!
Sorry to hear your 2nd dose has been so awful @cass2. Try to take it easy and give yourself time to recover. I’ll definitely let you know my results. You lot will be the first to know!
@hasnae87 You should definitely meet our @kartoffel for a cup of coffee. Maybe you should bring your husband so he can get a stern talking to!! I’d love that!
@sez I’m very pleased to hear that you will get 4 decent nights sleep but frustrated for you that they are so flipping ridiculous about it. I have a friend who was the nurse at a GPs practice for most of her working life who totally relied on sleeping pills to do her job. She thinks it is ludicrous too. Take away my sleeping pills and I spiral. The descent is swift. I wish they would stop demonising them. Sleep is really essential and when we are going through this WE REALLY NEED SLEEP!! It’s actually infuriating. Although I won’t be smashing cakes any time soon. Cakes got me through last year!
Anyway, I’d better get out of bed and get on. We are campervanning it again this weekend so I need to pack. Now where’s my first strong coffee…
Love you lot,
Salbert
xx
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Happy Friday Everyone,
Long time no speak!
I hope you are all doing OK.
I have tried to stay away from BC forums and can’t believe how active you lovely bunch have been! I finished phesgo at the end of June, started Letrozole in March only due to the various ‘rare’ SEs I have had with everything. Unfortunately Letrozole has been horrible to me and I decided to pause 3 weeks ago. In addition to insomnia, horrible constant hip bone pain, trigger fingers etc it also tripled my cholesterol! I went to Sutton on Wednesday for a blood test and guess what, after only 3 weeks without Letrozole my cholesterol has halved! Don’t trust your onco if they say it is not Letrozole.
I now have a bit of a dilemma, either stop AIs or switch to exemestane. Letrozole has already caused osteopenia, I can’t have zoledronic acid due to risks for my eyes (my onco recommended not to have infusions), have already had optic nerve damage and heart damage, so not sure about risking osteoporosis or worse, taking statins, then what else? I have put 5 kilos on with Letrozole and being overweight is an additional risk.
A patient recommended a cancer charity focused on nutrition/food, with advice based on strong studies and it transpires that my heathy diet is actually feeding HER2!!! I already knew about seafood, especially prawns with high cadmium level impacting BC risks but the food advice is worrying. Not sure why nobody mentions it? I don’t want to scare you but I have stopped eating copper-rich food which is showed to promote HER2 growth. Nuts, seeds, seafood, potatoes…
And for those of us, like me, who are triple positive - and I remember mentioning this last year on this forum - there is crosstalk between HER2 and ER+ treatment, with some recent studies exploring resistance to treatment.
Sorry for not being positive or optimistic but nobody has been able to reassure me on the efficiency of AIs on TPBC. Whatever I am doing or not doing, the risk of recurrence is high. After 18 months of treatment I am exhausted and can’t face 5 years of constant pain and lack of sleep with AIs.
I have a telephone appointment with my onco on the 14th and really don’t know what to do with Letrozole.
Have a relaxing weekend
Love,
Marion x
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So devastated, I am being complaining about leaking from my mastectomy wound for two weeks to BCN and yesterday couldn’t sleep a wink as my breast(implant reconstruction) was sore swollen and painful, woke up with fever and red breast, after being checked by surgeon he confirmed it’s not looking good, they took some fluid build up from my breast, was soooo painful as my breast was already sore and being put on antibiotics for now.
I don’t know how some people said the surgery is breeze, nothing is breeze for me.
I had blood test done and waiting for result and will come back to see doctors on Tuesday.
He said if I don’t feel well to go to emergency !!!
Anyone had same experience?
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Oh @hasnae87 I’m so sorry it’s not going smoothly for you. Sounds like you’re wondering why they didn’t pick it up and deal with it earlier. Just don’t hesitate to go to A&E if you’re not right. I’m guessing you are really run down with everything that’s gone on for you. Huge (gentle) hug, I wish I could do something more for you. Will be thinking of you, let us know how you are.
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Sorry to hear that you’ve had it rough with side effects!!
That food website seems a bit chaotic to me, I can’t find where the actual evidence for each thing is. Is it statistically significant evidence? I feel like if there was strong evidence about these things they would tell us. I imagine it’s very difficult to only change one thing (eg intake of one certain ingredient) and keep all other factors standardised to be able to say for certain that that ingredient is the sole thing increasing someone’s risk or spread, especially taking into account everyone’s different genetic makeup etc. Sorry, I don’t want to sound like I’m undermining it but doesn’t seem like a scientific website to me and for the sake of people’s mental health going through this I’d just be a bit cautious when reading it.
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@sooz1 re nutrition. I can recommend the bcn speakers live sessions. The lady who led it gave an evidence base for pretty well everything she told us.
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I agree it is chaotic however there are various links to academic medical studies. Some studies around copper depletion are currently ongoing, same thing for cadmium. I read a research made in Spain with BC patients and seafood consumption, with a clear red flag on farmed prawns from Viet Nam, Thailand etc which have a high level of cadmium. Unfortunately our supermarket shelves arw full of these.
Anyway I think we need to apply common sense. Heavy metals found in food are not going to be safe if consumed in large quantities. Some studies have been done using mice, and clearly human bodies are likely to react differently. Here is a link to a study on cadmium and evidence of impact on BC
https://pubmed.ncbi.nlm.nih.gov/24692081/
I wouldn’t say the surgery could ever be a breeze per se but you’ve been up against so many other factors that probably aren’t helping your recovery (completely out of your control and NOT your fault).
As @carrie5 said all these other stresses are probably not helping you at all.
I hope they start resolving the issues that CAN be helped so you can muster the rest of your strength to deal with the ones they can’t help with.
It shouldn’t be understated how other setbacks, be they physical or mental, can affect your recovery (I’ve learnt this with my lack of sleep).
You’ve had so much on your plate and you’re dealing with it so admirably.
Advocating for yourself is essential at the moment so keep at it, don’t let them fob you off.
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Thank you @carrie5 @sez
Its bit hard to deal with the pain sometimes, my breast like stone and hurt and sore,woke up with fever of38.3 and 122BPM
I hope the infection will resolve as I don’t want to go back to do another operation to remove the implant.
Just don’t want to go through the pain again of the drain or the wound healing process.
@salbret enjoy your weekend and the concert as well and hope you will hear good news.
@kartoffel once I will feel like myself again HOPEFULLY will meet for coffee.
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Hi all,
@sez glad to hear you have got some medication for your sleep.
@hasnae87 so sorry you are struggling with an infection from your surgery on top of everything else. Its a bit worrying you have high temp and high heart rate, i would urge you to at least speak to someone on yoyr team if you can at the weekend or go to A and E as suggested.
@marionse25 lovely to hear from you, we are all still here on this forum. Sorry you have had such trouble with Letrozole. Thankyou for posting about diet and food. It is a minefield out there with a lot of conflicting and unreliable information, but at least there were papers on this article backing up the info. Its onteresting to find scientific papers that specifically relate to Her2 + cancer, with info that may differ from general or other cancer advice. As you say research is still ongoing, so i can understand why the mediical professions are reluctant to make recommendations or warnings at this stage. Some units have nutritionists who might be able to advise with the up to date research. Its a shame chocolate is mentioned, but thats one thing i’m not giving up! 're
@salbert hope you red patch is nothing to worry about. Park that and Have a lovely weekend. I had a poster of Roger Daltry on my bedroom wall when i was a teenager. Have fun.
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Mammogram results- NED- no evidence of disease 
it’s over! Bottle of prosecco in the fridge
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Yay, @gromit12 Great News.
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Phew, thank goodness, go celebrate. X
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Hi all, hope you are well today:crossed_fingers:
I still have no full treatment plan.
I need to learn some patience as tomorrow is a month from my diagnosis and I am still with the little creature in my breast. I finished the multiple biopsies now and let me tell you that vaccum stuff one is not a joke! Luckily I still remain with my er+ her+ stage 1 grade 2 5 mm idc and 1.5 cm dcis to spice things up a bit. But they decided to try and spare my nipple🙈 also mdt qualified me to take part in safe-de trial and test my ctDNA. I still have at least 2 to 3 weeks to sort those pre surgery bloods, then do a surgery and then another test and pathology only then they can line up my treatment. My mindset is set on chemo prior to phesgo/radio/hormonal t. joy however wouldn’t it be lovely if the shitty C. decided not to circulate in my vlood post surgery. Any of you ladies went through that trial at all? I am glad to see the team is open but I still have realistically 4 5 weeks until I know my treatment and feel a bit more at ease.
I wish some of you happy celebrating and I hope those who wait for results can have some peace of mind. And those who are not well sending a massive hug your way:raised_hands:
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Woot woot!
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The waiting is tough @boobitis - so you’re surgery first if I’m getting that right? But still awaiting a definite date. Remember shitty C isn’t doing anything dramatic in the meantime but I know you just want rid. Line up all the help you can in the meantime and then go for distraction - every day you feel ok is a chance to do something fun/ relaxing/ memorable as well as the regular tasks.
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Oh the waiting-for-a-plan stage is really hard! But when I was at about the same stage as you my cancer nurse specialist was really reassuring about how, even with a relatively aggressive tumour type, it does stay stable for much longer than you would think. I think tbh the speed the NHS recommends for treatment is as much about minimising the impact on our mental health as it is for managing the physical side - by which I mean I think it’s not at all fun to wait, but not dangerous, if that’s any consolation.
I was signed up for the SAFE-DE study, and was really interested because as far as I can tell one of the big problems remaining in BC treatment is over treatment and blasting people with chemo etc that they may not have needed. But they had a few hiccups with the setup so I only ever had the one set of bloods taken for it prior to surgery but then the study was paused at just the point where it could have made a difference to my treatment plan so I ended up on the standard chemo etc pathway. So will be really interesting to hear how it progresses for you and hopefully it will help your team tailor your treatment to what you need 
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