Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Oh yes I hate it when I miss an unknown number call - they never leave a message and then you’re left guessing what they want you for, good news or bad.
I’m feeling hopeful today. I started investigating travel insurance for a potential trip later this year and it is really not as bad as I thought. Maybe we will get some sun after all.

I’m glad to report I had a successful call from my oncologist. When I asked her about folate rich foods on the Capecitabine she very wisely told me it’s better to eat healthily and stay strong than change to an unevidenced bland diet as I don’t have too many symptoms. She did tell me off for overdoing things and predicted I won’t be able to keep up the pace and will get more tired with each cycle. She also agreed to change my last zolendronate infusion in August so I can go to France that week. All in all quiet progress.

Good morning everyone, over two weeks and I haven’t had the dreaded letter about my first mammogram since diagnosis last year. Anxiety is really ramped up. I wish they would phone, it’s seems such a lengthy process waiting to hear by post.
I can’t even kid myself that there’s nothing concerning as they aren’t in a rush to contact me because the letter recalling me after they saw something suspicious on routine mammogram took 3 weeks. I hardly slept last night but listening to podcast helped

Me moaning again - sorry. I rang the hospital where I had my mammogram over two weeks ago and apparently it hasn’t even been looked at yet so my anxious wait continues. It seems a long time to leave someone waiting for results. I haven’t been drinking alcohol since my diagnosis (wasn’t a big drinker anyway) but I must admit I had a couple of glasses last night to get me off to sleep. My GP refuses to prescribe anything for my insomnia or anxiety. I haven’t got an addictive personality and I’m a sensible person so I don’t understand the logic in not prescribing short term meds to cope, surely taking zopiclone once or twice a week is better than lying awake all night with cortisol and adrenaline circulating through your body due to the angst of waiting for results

@Mycatispretty I am sorry you’ve got The Fear. Waiting for results is awful. I think it’s a positive that they haven’t looked yet though, you know they’re just behind rather than waiting to deliver bad news.

My GP was also reluctant to issue any zopiclone. I badgered and he gave me 1 box. I never took them but they’re here like a safety net which weirdly makes me feel better. Have you tried Nightol etc?

@TopOfTheCliff glad to hear your call was successful 🙂

@bringonyourwreckingball we’ve just taken out travel insurance with Staysure for a week abroad and I was pleasantly surprised at the price, considering I had to declare breast cancer for me, and brain tumour, epilepsy, carotid artery dissection and associated hypertension for DH 😑 they asked a lot of questions but I didn’t mind as it seems they’ve actually assessed the risk of us claiming during that week as opposed to an algorithm going “oh HELL no that’ll be £95903828 please you unhealthy swines”. (Actually, we’re probably a safer bet than some as we have a fairly accurate picture of our health and wouldn’t travel if we couldn’t/shouldn’t!)

I think I have made a decision on Tamoxifen, with the help of my new Macmillan counsellor who is lovely and has been really helpful - so thank you to those of you who encouraged me to try again. I’m not going to take it right now. If I change my mind, it’s not going anywhere. I would rather pay for more frequent mammograms and otherwise live normally, than deal with that every day for 10 years. The data I asked for to make a truly informed decision doesn’t exist. I’ve asked my treatment team for it, I’ve tried searching for it myself, it’s not there - so as I can’t be sure of my own personal risk of recurrence and how much benefit I would personally get from tamoxifen I have to make a decision about what kind of risk I want to take. Even if I by some miracle don’t get any side effects, just the act of taking it every day will make me anxious. I have such a history of terrible MH and tamoxifen is the only aspect of all of my treatment that is causing a relapse of anxiety, depression, issues with food, everything. I don’t want my DD growing up in that environment. I just want to feel well and live normally. The bastard could come back anyway, or I could get a totally different cancer, or I could have a heart attack, or I could get hit by a car. DH agrees with my decision and says he thinks he would do the same thing.

I’m writing this so I can look back on it the next time I get into a panic over it (probably 1am tomorrow morning as usual)

Yeah I've heard that one sbout hpv related cervical cancer. I don't care what people think about me . I'm 51 and it's more likely most people of my age have HPV than not. Unusual to get to your 50s and not ever have had skin to skin contact ( which can pass it on) or never been sexually active. There wasn't the vaccine available either when I was young

@Samlewis96 yeah that was a totally pointless thread - I've seen the 80% statistic too.

I've got cervical cancer and see the HPV element as just one of those things - most people have it at some point in their life, I just got unlucky and it turned into cancer. In one of the cancer specific FB groups I joined (and left - it was not the right place for me mentally) there were lots of people very upset about their HPV status and feeling in some way 'dirty' because of it.

@WorryMcGee it sounds as though you have made as informed a choice as you could do. There are so few guarantees and certainties with cancer you can drive yourself mad trying to find answers that simply aren't out there.

@WorryMcGee I had the same dilemma re Tamoxifen. I tried as hard as I could to tolerate it but it made me feel physically unwell and suicidal. I felt like I’d aged 30 years in the 3 months I was taking it. Like you I decided the side effects weren’t worth the uncertain ( in my case) benefits

@WorryMcGee these decisions are very personal and as long as you are comfortable with what you decide nothing else matters.

I am struggling with a late burst of side effects to round One of Cape. I’ve rested all day and avoided green leafy things. I’m now watching Eurovision and eating a plate of cheese. That must be low folate!
I’m feeling a bit miserable at the thought of seven more rounds of this drug. It is going to screw up my summer if it carries on like this.

Sending strength to you all
Top

Hi all, I’m just dropping in to see how it’s going, although being autistic and a bit useless I’m not sure what to say but I didn’t want to just disappear after my all clear. Hope everyone is coping as best they can.
💐💐💐

The HPV thing is bollocks, I had it in my 20s and had to have LLETZ for pre-cancerous cell changes but have tested negative for the last 20 years.

@WorryMcGee i got my travel insurance quote from Staysure too, I agree they do seem to actually assess individual risk rather than taking a ‘computer says no’ approach. I’m actually pretty healthy right now and so closely monitored I would know if there was anything wrong with me

I got emotional todayI didn’t realise it was going to be a sit down appointment with scans etc. he said he can offer me ten sessions of radiotherapy and that I can have a mild one or a full on blast which will cause side affects like bowel incontinence,cystitis and a massive swollen leg. Oh god it’s up to me which one I go for. He said Chemo is working well and if it carries on shrinking he will talk to the surgeons if they can operate I won’t need any radiotherapy. I wouldn’t look at the scan. I can’t see myself going back to work this year😕 he said he can’t say when or if it will come back because I’m a difficult case. I feel so sad and alone.

Each If it were me I would not go for full on radio with those side effects, that's no quality of life though maybe worth checking are these certainties or 1% chance to get idea of risk. I also think I would encourage them to help you make decision though oncologists do length of life rather than quality so you need to think about that as well.

MyCat So sorry to hear you felt suicidal on the Tamoxifen. If you ever want to chat, or feel that low again, please feel free to message me any time of day or night. Please don't feel you need to go through it alone.

@EachandEveryone

Did he say it 'WILL' cause or 'COULD' cause those awful side effects? The list of possible side effects from our cancer treatments are downright horrific.

My list of possible side effects from radiotherapy was equally appalling although different to yours (heart, lung etc rather than the areas of the body you mentioned). My radiologist said I am high risk due to my other medical conditions such as hypertension, asthma and others (I had blood pressure crisis and now hard to control BP, asthma, etc )

Chemo worked well for me too, and the oncologist told me it meant my prognosis had changed from poor to good. That was without the radiotherapy because I don't think they can check the effect that has (?) I could be wrong but they don't seem to be checking my body post radio.

I wasn't offered a mild vs full blast, just told 15 sessions and on which areas - it was on about 5 areas.

I find it rather unfair of him to ask the patient to choose, I mean we haven't been to uni to study medicine or further specialisms for all those years have we. We do need autonomy, but that is going too far I think. I wasn't asked what I thought, just given it, although the radiologist did say to me that my treatments are so new they don't have sufficient data yet to know whether I need 15 sessions or how many or if any make a difference...

I went ahead with the 15 sessions of radio and so far, have found it fine. I mean in comparison to chemo it was really nothing. Who knows what is going on inside me though and if there will be delayed effects.

Good luck with your decision. Can you get a 2nd opinion from a doctor?

You are not alone xxxxxx

@Silkierabbit thank you so much for your words of support. My friends are great but I don’t think anyone can truly understand having a cancer diagnosis until they’ve experienced it themselves. I also don’t want to burden my friends so I just play things down.
At the moment I’m struggling with waiting for mammogram results which I was told yesterday, due to strikes and bank holidays may not be available for another 2-3 weeks. If I felt well maybe I’d cope better with the ups and downs of my cancer “ journey “ but the truth is I’m so fatigued I have little energy for anything. I don’t know if this is because I had covid badly or cancer but either way I’ve gone from a very active gym goer and runner to a sedentary life as I have zero energy. I’m definitely not depressed because I enjoy the small, simple things in my life but I’m finding it difficult to adjust to the new me and my new very small scale life

RASH

from Trastuzumab and Pertuzumab aka Herception and Perjeta / Phesgo

Anyone had itchy eyelids or sort of eczema thing on their hands?

Had it for weeks and it's getting me down a bit. In addition to all the other stupid side effects from everything.

@EachandEveryone as Silkie says, I would definitely ask if those side effects are a certainty and what the risk actually is. If it's a definite, then I don't think I would want the full blast either. Do you have a clinical nurse specialist you can talk to? Also, see if Macmillan at your hospital do any group workshops/courses.

I'm not a Tamoxifen girl as my oncologist decided i should have ovarian suppression injections to put me in menopause so have letrozole. I don't think I'd quite appreciated the side effects. I've discovered the brand which is the main culprit so pharmacy has made a note to avoid that one. I feel way older than I did and think I look older. Others don't get the long term side effects of cancer treatment. I also wish people wouldn't tell me how wonderful HRT!

I'm also frustrated with having to chase things up with the hospital. It's not urgent stuff but it's just something else to do.

Tbh I think now Im home and sat down, I should not think about it until the chemo is over which is another two months. Once I have the scan will be the time to decide. I mean if its shrinks enough it will be surgery which is I assume a better outcome?

i dont want to know about life span and differences in outcomes just yet. I never even looked at the scan on the screen. Its a complicated one because of the unkown primary. Maybe it has disappeared maybe its very well hidden. No one will commit ro saying. My main oncologist thinks it has but Im not to quote him on that.

@Vinorosso74 . I'm also on ovarian suppression and letrozole, so far not too bad, but it's early days for me. I also find it hard when people bang on about the wonders of HRT. It's great that there's so much more support around menopause and I'm pleased my friends are able to benefit. At least that's what the nice bit of my brain is thinking while the other side is shouting 'it's so bloody unfair'. I had some ovarian pain in my first month on zoladex and letrozole which is unusual apparently so I am about to have to go to the hospital for a transvaginal ultrasound. I haven't had any pain at all for the last few weeks, so am 90% sure it's nothing to worry about, and I am mainly cross about having to have it done and put up with more invasive tests, but there's a niggling doubt.

@EachandEveryone - that is a tough place to be, and I think you're right to put it out of your mind for now and focus on getting through chemo.

@Vinorosso74 I'm just about to start taking letrozole. I have an oncologist appt on Monday where he wants to do some blood tests to confirm I'm fully menopausal. I'd previously had a Mirena coil and haven't had any menopausal symptoms at all but the first blood test seemed to say I was definitely menopausal, and so he wants to retest but I'm expecting to start endocrine therapy next week. I've just come back from a Bootcamp/healthy eating thing in Spain where no one knew my diagnosis (apart from the organisers) and it was just so wonderful to feel 'normal' for just a little while. So I am dreading starting to take something that may make me feel not so great, especially when my recurrence risk seems low-ish. But I'm hoping that as I seemed to go through the menopause without realising it, that maybe I'm not so sensitive to reductions in oestrogen and maybe that means I may get off more lightly side-effect wise. So I'll start taking it and see how I go.

I'm also getting extremely fed up of all my similar aged friends extolling the virtues of HRT when I'm about to have my oestrogen levels wiped out even further. I'm taking the deep breath and smile through gritted teeth approach with them but it is wearing very thin!

Parking it until you know where you are with the chemo is an excellent idea @EachandEveryone

Eat that elephant one bite at a time - advice I could do with taking myself sometimes.

Peace and love to everyone whose treatment is making them feel shitty at the minute.