Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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I finally got though to the Breast Care Nurses to ask if I should be having a mammogram and review this month. Shockingly it turns out that when the oncologist discharged me back in March after radiotherapy I was off the books with no follow up. He should have passed me back to the surgeons so they could arrange annual review but he forgot. They are embarrassed and trying to slot me back in to the system. It’s a good thing I checked. You need to keep chasing the NHS as everybody is so busy they drop the ball quite often.
Teeth and gums intact here, and enjoying the short curly hairstyle. I hope it lasts, it suits me better than my old hair.
Off to plant garlic lefthanded as everything is annoying my right arm.

Regards to all. Stay well @MrsPnut
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@thereisonlyoneofme I'm really squeamish about the dentist too so part of me wants to just close my eyes and put my fingers in my ears but experience has taught me that will not end well!

Spoke to onc this morning - back on steroids and I need sleeping pills (I did not sleep at all last night - I don't know how I'm still functioning and I have work ). Doesn't look like I will be resuming Kadcyla in time for next cycle and she's doubtful I will be able to restart at all. And I have very mixed feelings about that - I tend to think of it as my miracle drug as my post-surgery pathology was not so good, then again, tolerance is so poor and quality of life etc. But the pneumonitis will be the deciding factor and that decision might be made for me.

So I will revisit my exercise (for anyone who missed it - 3-5 hours/week reduces relapse 35-50% - only your actual medical treatment has a similar impact). I'm good for the general by walking but best to also have some resistance training - my arm muscles don't get any action and I do have unused weights under the bed. That goes to repairing muscle mass which tend to be lost and regulating insulin etc to decrease growth factor stimulation of cancer cells (this is also why reducing sugar and intermittent fasting is recommended - no chance of that until I'm off steroids).

@TopOfTheCliff that's interesting. I was expecting a surgical follow-up and haven't heard a peep - I might chase that up. I know my mammogram is booked for April.

May I rejoin you again? Brief reintroduction: BRCA2 positive, first diagnosed with ER+ BC in Dec. 2016. Lumpectomy, followed by double mastectomy with DIEP reconstruction. Recurrence in July 2020 in the lymph nodes. Adjuvant chemo for 16 weeks, then surgery, then radiotherapy. Extra bone scan in April, no issues. Excellent response to both chemo & surgery.

BUT I have been having extreme health anxiety ever since finishing my radiotherapy at the end of February. I keep poking & prodding myself and for every ache & pain I think of mets. Been having counselling (Maggie’s) for this. Had my 6-monthly check up 2 weeks ago, bloods were deemed fine, all hunky dory.

Fast forward 2 days ago: I started feeling slightly swollen under the affected armpit, can’t feel anything really apart from a tiny little niggle which feels different from a lump. May just be a bit of scar tissue left behind. My tricep muscles on the inside of that arm feel quite numb, more than usual. So, a quick phone call to my BCN to ask for someone else to examine me as I seem to have lost all sense of reality and sense, really. She was very reassuring, said she would make a referral to the BCN examination nurse. All fine and dandy.

30 mins. later I get a phone call from her, saying “Nothing to worry about!” BUT she looked into my liver results and they were marginally elevated, so after speaking to my oncologist they have decided they would like to repeat the blood test (GGT). Again, “please don’t worry!”

GP practice nurse is on holiday next week, so the earliest she can take my bloods is 2nd Dec.! I cannot wait that long, I have practically buried myself already, I am a mess. Have got appt. with GP next week to prescribe some sort of anti anxiety medication as I simply cannot go on like this, not knowing what’s been going on.

Have read on CR website/MacMillan that Examestene (I am on 25 mg tablets daily) can sometimes have an effect on your liver function. I have no symptoms that MacMillan and other cancer charity websites outline, absolutely none!

Not again, please, not again. If I had a choice I would plump up for lymph node recurrence rather than liver mets. Jesus, listen to me, cancer can really fuck with your mental state, bloody hell!!!

Sorry for the rant. While I am waiting to make sense of it all it would help me to park myself here. Again.

Am thinking of taking milk thistle but not sure if it would interfere with Examestane.

Love & strength to you all.

Just to say that I am thinking of going private for my blood tests - does anyone know if my NHS oncologist/BCN nurse would accept a private blood test result?

@balkanscot Hi there. One of my worries about coming off Kadcyla is going into the no-man's land of having no ongoing treatment and just waiting for the other shoe to drop.

I sometimes take milk thistle as full dose Kadcyla send my liver bonkers - but I did a journal search and it does interact with Examestane I'm afraid so best avoid it. Examestane itself certainly can raise liver enzymes - basically the liver is not fond of drugs and tends to have to work harder. Liver function is easily upset but it's quite right that they should check it out. They do tend to get on a roll with the tests which can keep fueling rising anxiety. Liver mets are not the most likely next problem following BC.

They would accept private blood tests but you are setting a precedent - is that how you want to handle every query going forward? Hope you have a lot of money to burn. This is a pretty low-risk level investigation - you are likely to have a lot more of these. The problem here, as you well know really, is anxiety. I think we all wonder how we can deal with that.

balkanscot So sorry for what you have been through and totally understandable to be so anxious. I am just at the start so no expert on this but asked hospital if they accepted private results and they said its fine but obviously it gets very expensive and sometimes goes via gp so not always much faster.

I would maybe phone back and say they can only take bloods on 2nd December and see what hospital say, if they say fine, they are the experts and I would trust them and try and distract yourself. If they want it earlier our hospital do bloods, maybe they could give it there on nhs though never tried. Though if you would be calmer and money then maybe you could go private if above fails. But when you are anxious you often just then get a new worry.

I am also an anxious person and I can only do either complete panic / disaster mode or complete calm la-la-la mode by distraction or pretending I have nothing but ideal is inbetween. I did speak on here with a lovely young lady who had grade 4 terminal cancer and she was so calm and cheerful and I was amazed and she said at first she was anxious / angry etc then she realised she was wasting what little time she had left on those emotions so stopped using her energy on them. It makes sense and I think she just enjoyed days when she could but not sure I would be capable of that.

I find trash TV and pets help if you have any of those, I have lots of both. Plus kids who keep giving me new issues to deal with though that isnt relaxing but does distract. I do need to start exercising, used to do loads but stopped a few years ago. Though my exercising may need to be housework as rather a lot of it now. Back tomorrow for treatment plan.

@balkanscot - sorry to hear you’re having a tough time. Would your hospital not do the blood test for you? In terms of anxiety would it help to talk to someone at breast cancer now? I’ve used it once and the nurse I spoke to was very helpful. They also have a ‘someone like me’ matching service that could help?

@Silkieschickens, @3beforeme, @needabitof - I’m not sure I have said hello. I was where you are in April. Waiting for results and fairly stunned about everything that was happening. Still in treatment now but it’s amazing how quickly the time has gone.

Still having post surgery issues but hopefully will get where I need to be for my Radiotherapy dates.

My gums are still bleeding whenever I brush my teeth although they don’t hurt. Have a dentist appointment in the new year.

@MrsPnut - hope your dd is ok. I’ve had my booster and touch wood have managed to avoid covid so far. I have/do keep a low profile though.

Bone scan for me soon to investigate a few niggles. Feel calm about it so far. I can’t change the outcome but if there is a problem with anything I can hopefully get help.

Best wishes and strength to you all.

@Silkieschickens good luck today. I'm the same as you re anxiety - one minute I can't actually believe this is happening, the next I'm imagining the worst.
@JeanLannes Hello, I like your calm attitude, I need to cultivate that!

Hi to all the newcomers, you are welcome here whether just for a short stay or the long haul.

@balkanscot if you have the blood forms for the test you can usually take it in to the hospital phlebotomy service which is a walk in clinic in most places. Maybe the nurse could leave them out for you?

I have been thinking about positive mental attitude and anxiety this week. My personal trainer (get me ) has been emphasising how positivity is attractive, generates goodwill and makes it easier to navigate through life. I am lucky to be one of life’s natural optimists and bounce along cheerfully most of the time. But even the most upbeat of us have to deal with genuinely scary stuff, cancer and bereavement, financial problems or divorce. In the last ten years I have been through all of those in turn. I think what I have learned as hopefully I put all those issues behind me is that I am strong enough to weather them all and come out the other side battered but smiling with relief and appreciative of the good times. It is the small gains that get me through. Taking time to drink coffee with a friend in a nice place, or going for a walk somewhere beautiful helps recharge the batteries. Even just lying listening to music and breathing calmly got me through some days. Sometimes it all gets too much and a good cry and a download to a kind friend or Macmillan person helps. Nothing goes on forever.
What would I do if I had a naturally gloomy outlook? I think I would have to undertake some serious cognitive therapy to see where the negative messages had come from. Can we change our natural disposition? If all those bad things didn’t break me would a series of lottery wins and sporting triumphs and a heady love affair lift a gloomy person out of their slough of despond? I don’t know but it’s interesting to conjecture.

Can you tell I’ve got too much time on my hands while I sit on them.
Love and positivity to all
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@TopOfTheCliff I've pondered this too. I tend towards the gloomy (I like to think of it as 'realistic' ) - but I'm not particularly anxious. I never went through that deep anxiety/how can this be happening phase when diagnosed - cancer is hardly rare after all. It's the feeling ill/damaged that gets to me most.

Like the redoubtable and ever-strong PNut, my treatment has gone rather tits up at several points and I have faced my worst fears as a squeamish patient - yet I have come through it which is kind of satisfying (although I'd just as soon not have TYVM). But it is amazing what you can endure when you just have to get on with it. Best not to waste energy on anxious anticipation - just deal with it one step at a time.

I can get irritated with too much positivity talk but even I have made attempts to be a bit more positive and I have indeed had a lot of therapy previously aimed at my personal gloomfest. Identifying the things that hit the spot for us personally, as individuals is, I agree, key here - sometimes they are not things others would appreciate. More music has been big for me - especially playing music (hence my despondency at the neuropathy in my hands) and a bunch of personal passion projects (including some shorter time frames - just in case... I find keeping that in my planning actually helps as I like to feel I've got all options covered).

Totally agree with the comments on not wasting precious time - this is part of my irritation with being actually sick.

Thank you @TopOfTheCliff for your musings. Really helpful.
I’m in the pause between surgery and what next….. and keep being told how positive I am. The anti d’s help- would reccomend them to anyone
I have some wonderful positive friends which helps- and a v supportive dh. Being retired helps too, although I am dealing with care for elderly dm96 who lives v locally which is the biggest challenge.
All the health professionals tell me to put myself first which I am trying to do but there is a great void left.
He carers are excellent which helps a lot.
In lockdown I did the science of happiness free course on line through coursera which has also helped massively.
Thank you to all on this thread I really appreciate it.

@Acinonyx2 you and @MrsPnut, and @balkanscot and indeed me with my broken ankle during chemotherapy, have endured more than our share of bad luck and complications during treatment and could justifiably be very proud of our resilience in getting through it all so far without total collapse. Yay to us! We are all still here and we are awesome! I hate all the warrior talk and cheering but sometimes it is justified.
To the frightened people starting out down the scary path to recovery I would say you will be amazed at how you will find the strength to cope with it all. Just keep plodding along day by day, hour by hour, and you will get through.

I got up just now and went outside and accidentally smashed the brake lights on my husbands van so I am confined to the sofa again.
Cheers all
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@Acinonyx2 @TopOfTheCliff @Silkieschickens thank you for your kind words. Private blood test containing GGT info would be around £30 from one of the local pharmacies. BCN hasn’t phoned me yet, I suspect it’ll be Monday at the earliest I will hear from her re: private blood test results. I am guessing I am not a high priority as this is something purely precautionary. My oncologist is like that, always doing extra checks because of my BRCA2 status. How I wish genetic engineering would hurry up and I can have this wretched gene that sleeps on the job out of my body! Alas, not in my lifetime.

@TopOfTheCliff interesting thoughts. Optimistic outlook that comes naturally is something my mum has. Sadly, I seem to have inherited my dad’s utter pessimism (alongside the effing gene). However, I believe it is possible to retrain your brain to move from the learnt pattern of natural pessimism towards the more optimistic path. It is a blooming looooong road but… I haven’t reached that stage yet, but hopefully with Maggie’s help, I can change the course my brain tends to take naturally (pessimism) and divert it. The more I practice the better it’ll get. Speaking like this seems like a doddle but in practice…. Still, if I can survive cancer, I can bloody well train that brain of mine!

Eeeek, re: husband’s brake lights, @TopOfTheCliff . I tend to scrape wheel caps on cars, parking too close to the kerb, trying to squeeze into the tightest of residents parking slots (the joys of city centre living).

I feel a bit calmer now. I bought myself a carton of beetroot juice instead of milk thistle. I know it doesn’t make an iota of difference but it makes you feel like you are just a tiny bit in control (not really, but the illusion helps nevertheless), I poked and prodded the place under the armpit again, spooked myself silly, then realised I was poking the edge of the bra instead of my skin. Lord almighty!

I had a look at Breast Cancer Now website and totally freaked by the first story I read - a lady who was diagnosed with secondary BC two months after her annual check up. And had no symptoms whatsoever! Must stop reading things like this. But I determined to be a bit more proactive and maybe contact them to pair up with a “buddy”. I find talking to other people in the same boat really helpful at times, it makes you feel like you are not the only lonely, sad and scared (and scarred) person who has been treated for cancer.

Just reading your replies here made me all tearful and appreciative because you all know what we have been through.

I have also steered back in the gym now and restarted jogging. Have also thrown in some Pilates outdoors on Saturdays in the mix, too. Still way off from @TopOfTheCliff’s Iron Lady schedule but am getting there. My main motivation now is not weight loss/keeping slim, it’s keeping my bones safe from osteoporosis.

@Silkieschickens have you got your treatment plan yet?

Waving to @MrsPnut. Not that long until surgery now. I still remember the photos of your pugs on your DH’s head you posted about a year ago.

Went today, lobular cancer, 5cms lump, second lump discovered by lymph mode today, will do mri and ct to see if spread round body as hip and rib pain. Think first lump will be larger when operate. Surgery first. Not sure if they book mri and ct or gp does, they said hopefully not stage 4 but sounded quite grim though reasonable chance not stage 4 and maybe stage 3.

@Silkieschickens hard stretch getting to the final diagnosis. I think generally the hospital books the scans and they generally do the CT to asses for stage 4 asap - that's something everyone needs to know. I had some suspicious pains too - I know it's nerve-wracking waiting on that final staging - hopefully that will get done very soon.

@balkanscot are you in the UK? I didn't think we could get blood tests from a pharmacy like that. I definitely think doing what we can to take some control is good all round - exercise is my big one there. But no-one can compete with Top on that one.

Yes gp has confirmed hospital book mri and ct, hospital sent me a letter for gp with lots of details on. Will do surgery first after mri and ct. Lobular cancer.

Thank you for all your lovely words, I get through it by just putting one foot in front of the other - that and gin.

@balkanscot I’ve added the photo again and their more usual pose on my bed.

@Silkieschickens Hopefully the CT scan comes through quickly. Mine was pretty quick this time last year. The PET scan took longer but only a few weeks. Hopefully they can get a plan together fairly quickly but I did have 6 weeks between my first cancer being diagnosed and starting treatment but there was some waiting for results before deciding which cancer to treat first.

@Silkieschickens - I am sorry you have had that news today. It’s a lot to take in. The most important thing is that you have gone so you are now in the system. My BC was also in my lymph nodes and main lump around 4.5 cm but there was another area of they were concerned about so they classed it as 6cm. They could see the swollen lymph on the ultrasound at my first appointment. Waiting for scans/test results is hard and for me the worst bit. Back in April my mind was all over the place. The most useful piece of advice came from one of the nurses in the breast clinic who said not to go down any rabbit hole before you need to. Obvious really but the way she said it really resonated. Aches and pains can be caused by all sorts of issues so just try and take everything a day at at time at the moment. x

Hey all, sorry I've been missing but working 40 hours a week at the moment. Waiting for my appointment with my oncologist.

Love to all. XX

Hello all

Some of you may remember me from earlier in the year - I stopped posting on this thread around the time my lymphoma went refractory and I had to change chemo I think.

I'm sorry not to have stayed in touch (I reached a point where I couldn't face reading about anyone else's illness when I was at my lowest) but I wanted to pop my head in to let you all know that, after a stem cell transplant in august, I've now had a post-treatment 3 month clear PET scan so officially in remission with no further treatment planned. Trying to come to terms now with post-cancer/post treatment life and get it to all make sense in my head, which isn't easy. There's no 'back to normal' unfortunately but I'm definitely cherishing every day that I feel well and don't have to go anywhere near a hospital.

Thanks MrsPnut and nice pictures. They have said mri and ct should either be late next week or early week after but both in 2 weeks, confused me by saying could I tell them when they are then a letter to gp saying what they need. But gp confirmed they order them and manage everything which is better. Then said doctors meet after that then mastectomy, well doctor first came in and said lumpectomy may be possible if I wanted to keep my looks as much as possible. I said I wanted to see my children grow up and didn't care about my looks now I am nearly 50. Then he started examining me and nearly swore when he found a second 2cms lump as well as the 5cms lump by a lymph mode and then said the lumpectomy may well not be an option any more. CT is to see if spread, doctors last week seemed confident not spread, he seemed less sure. The nurse went through if its stage 4 in quite a bit of detail which helped but still a lot to get head round. Infact not trying to get head round it as then I cry.

Think there is more chance its stage 3 than stage 4, I have lots of medical things in doctors letter. The nurse said I should go out this weekend but I just feel like hiding under my fleece duvet and not coming out ever. I will watch trash TV, look after kids, listen to the birds on the thatched roof and pretend I have nothing wrong with me.

At least school issues have been resolved after 2 days of talks. My doctors letter wrote 1 child needs me, nope its definitely 2 children who need me. Talked to the silkie chickens on my return from hospital and a female neighbour and chickens were chatting back and female neighbour is a medic so was useful. DH was crying a bit when I told him, he had been so certain it would be nothing but I was expecting this as I knew how big it was.

Thanks JeanLannes that sounds similar to mine and hopefully aches will just be part of the cancer but not a spread of it for ribs and unrelated for hips. I have had bone pain before and mri before showed some type of arthritis so its possible.