Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@Scandimandy I have ovarian, but I recognise your feelings too. I was kind of like, well, now I know and we are dealing with it. I must admit that that did fade for me, and now having finished chemo 5 months ago I am probably more anxious than I was back then! I found dealing with the initial diagnosis okay, the NHS were fantastic for me, everything was quick and problem-free, and I am clear of cancer. However I’m now spending an unreasonable amount of time stressing re recurrence etc. You will get days where you are just distraught, days where the void opens up and you can’t imagine ever feeling normal again, but those days are not every day, you will feel joy and happiness and even boredom again!

Hi @Scandimandy , I was diagnosed with IDC grade 3 last summer. I had no symptoms & it was picked up during a routine scan. I was blown away by diagnosis initially but over time I got used to it & once I had my treatment plan I was more relaxed about the whole thing.

There is no right or wrong way to react to something like this - on the outside I was calm when I got my diagnosis but on the inside I was a bit of a mess to be honest but I have reached a level of acceptance and feel ok about it all now :). Let me know if you have any questions as it can sometimes feel a little overwhelming at first to try to absorb everything!

@Scandimandy - my BC is also grade 3, which is scary I know. But the biology of breast cancers is extremely variable, and not all grade 3 tumours are the same. It's a whole shopping mall of different outlets, not just one brand... In the 8 months since my diagnosis I have been through every emotional response: fear, optimism, kick-ass bloody-minded-ness, despair, rage. You name it - I think it's all normal. I certainly feel better when I can 'get on with it' as others have said. I'm feeling a bit better just now as I finally got a date this morning to start RT on Monday. I've been waiting for over two months since I finished chemo so am really pleased, in spite of the short notice. Wishing you all the best, and do feel free to ask questions or vent.

@Scandimandy I recognise these feelings as well. It's like you are getting ready for a battle. My crash came when treatment finished and it was a a bit WTF am I supposed to do now then?

Thanks everyone for your support, I am definitely distracted by my diagnosis but more in an informational hunt way, I want to know all the information! so yes, maybe once treatment is near the end I'll be more anxious about it all as the battle will be nearly won!

@atreus sorry you are in the same boat but I would be interested in your journey and how your DD are now if you don't mind me asking? Did you have Chemo?
@Onecattwocats would you mind if I ask what your treatment plan was and whether you are finished with it now?
@dotty2 sorry you had to wait so long for your RT, hope it all goes well on Monday!

@Scandimandy sorry to hears your news. How you feel is how you feel, there is no correct answer. I was numb for ages then very angry, then resolute and cheerful. I’ve had two wobbles when I cried a lot but they don’t last long.

I had triple positive grade 3 IDC BC in 2020 and triple negative grade 3 IDC BC in 2022. The treatment is tailored to whether you are ER/ HER2 receptor positive or negative and whether there is lymph node or other spread. You will get a plan from the MDT meeting once they have all the information. That can mean scary scans but if no sign of lymph nodes they may just push on. Scans are good as Knowledge is Power! Don’t forget when information gathering to stick to Breast Cancer Now and Macmillan and NHS sites and avoid Google. The US sites are interesting but not as relevant.
Some start chemo first to shrink the tumour, others have surgery first, but it’s likely you will need to throw the kitchen sink at this and have every mode of treatment. It takes at least a year and more if you have immunotherapy.
The prognosis is excellent in early BC ( stage 1 to 3) but it is bloody hard work! I’m almost through my second cancer triathlon and about to go in and pick up the first cycle of the next drug. Ask anything you like as I’ve probably got the Brownie badge for it. On the plus side there is nothing I can’t cope with now after double cancer.
Sending all best wishes
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Thank you @TopOfTheCliff I can't even imagine what it must have been like to have it twice in two years! My HER result wasn't in yesterday and my next appt will be for an MRI. I know the MRI will stage it but I can't remember which result determines whether I have chemo before or after surgery. Its all a bit of a blur. My ultrasound showed nothing in the lymph nodes but they will "do a sentinel node" if that is the correct term so I am hopeful it is very early stage. Does this cancer typically spread to lymph nodes first or can it spread to anywhere in the body without touching the lymph nodes do you know? I will def be staying away from Google, speaking to individuals on places like this has been positive for me although I know it is all a very different experience for everyone. I have some Breast Cancer Now bumpf but I haven't touched it yet. I'm at work today and trying to get at least a little bit of work done :).

@Scandimandy sorry to hear about your diagnosis. I reacted the same way as you and so far have coped with it all ok I think, on the surface at least. Perhaps I feel I have to be calm as others close to me are struggling? I’m not sure really, I wish I knew.

My last RT is today. Since yesterday I am crushingly tired. Wasn’t expecting to feel this bad. Please tell me it passes soon?

I think you are right @KefaloniaKid being positive for those that we love who are struggling. Sorry re your tiredness, are you having to work through this or are you able to have the time off during treatment?

Hi @Scandimandy, No worries, I had a mastectomy (with an immediate diep flap reconstruction) After that it was recommended that I have chemo because my final pathology report showed that the Idc was almost 30 mm & DCIS was 80mm, grade 3, er positive (weakly - grade 4 out of 8 Allred score) & her negative. My lymph nodes were clear on ultrasound but I had a tiny micro-met when they did the sentinel node biopsy - they said it was treated as a negative result but I have to say this up-ended me a bit!

I had 8 cycles of chemo every 2 weeks. EC x 4 followed by Paclitaxe x 4. This wasn’t at all as bad as I was expecting. I am now on Letrozole which is causing some foot pain which I am hoping will settle down soon. I did query taking Letrozole as mine was only weakly er positive but was reassured that it will still provide some protection against recurrence - fingers crossed anyway! I will also be starting bisphosphonates in a few weeks as this is thought to further reduce the risk of recurrence.

I hope you get your treatment plan soon - hopefully you have been assigned a breast cancer nurse - mine was great! Take care & fire away with whatever questions pop in to your head xx

@Scandimandy - if lymph nodes are clear that's very good news, but they won't know for sure until after the sentinel node biopsy. It can spread through the blood stream as well ('vascular invasion' - one of the things they look out for during surgery) but I don't know how common that would be without lymph node involvement. (I had both.) It's the HER status that determines whether they do chemo first, usually - but there are some other factors.

@Onecattwocats - I'm the same re being only moderately ER+ and I'm very weakly PR+. My last appointment was with a very helpful oncologist - best I've seen so far. He said it would be a 'reasonable hypothesis' that AIs were of less benefit in these cases, but that there wasn't a body of evidence as it would be hard to design a study that looked at this, as there's no consistency in the way its recorded. My attitude is to throw everything at it and give the AIs a go, but if I find the long-term effects too hard I can review. So far so good for me, but only been 2 weeks.

@Scandimandy so sorry to hear about your diagnosis. I have triple negative IDC grade 3 stage 1 with no lymph node spread - or rather had - latest MRI showed complete response to treatment, no sign of cancer. It hasn’t been fun getting to this point but once treatment starts it becomes a process and I found the fear and dread receded a lot.

Thats great news @bringonyourwreckingball how long has it taken you to get to this point?

I just got back from the Cape consultation. A robot could have done as well as the nurse. She went through a script then read out a list of possible side effects that I might or might not get. Everything I asked her she said there was no evidence for or against, except she told me to avoid soft cheese when I know there is no evidence for that. She didn’t ask how I was, or how I felt about taking the drug. She said I was lucky it was available so far from London! I’m back to being grumpy. I had a magical evening out on the river last night and I even won the race steering a friend’s boat. I’m going to hang on to that feeling. Basically I just don’t want to take this sodding drug but I am going to on the off chance it is necessary and will make a difference.

Sending strength to you all
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@Scandimandy I'm grade 3 stage 2, at the beginning of treatment, I was very calm after diagnosis, lots of info gathering. It hit me after my 2nd chemo and had major emotional response, feel "fed up" with it now 😣. Mine is Her2+, ER+ and I'm having chemo then surgery.

@Scandimandy i started treatment in January - weekly paclitaxel and immunotherapy for 12 weeks, I’m just starting my second round of 3 weekly EC. I wasn’t expecting such a good response so quickly, I’ve been very lucky.

@bringonyourwreckingball how did the EC compare to the paclitaxel? I’m starting the first of 4 paclitaxel next week and am hoping my body stays in the same routine of symptoms which I’m just about managing to cope with.

@LemonDrizzle10 I would say that the EC gives more gut related side effects like nausea, sore tongue, taste changes and diarrhoea while the paclitaxel gives more aching bones and fatigue. Be prepared with decent painkillers and ask for more if you need them. I took paracetamol, ibuprofen, codeine, antihistamines, amitriptyline and gabapentin to get a decent nights sleep! But of course we are all different and all my treatments seem to cause me joint pain. Oh the joy of chemotherapy!

@TopOfTheCliff - looks like you win today's prize for useless health care professional saying all the wrong things. Lucky it's available so far from London? Has she not heard of NICE? I think you and I are similar in that I also am fed up about all the drugs and their SEs which may or may not have any benefits, but I am also of the mind set I should try everything just in case it is the one thing that makes a difference. And at the very least, if it does recur, I won't be left wondering if things could have been different. It's rubbish though - hang on to the memory of your magical night on the river.

River at sunset - bringing balm to my soul

Gosh - that's very beautiful.

@Scandimandy very happy to share anything about what's happened to me so far. Both my girls are away at Uni and so I waited until I had the biopsy results before I told them. It was a big shock for them but I hadn't wanted to say anything before then until I knew there was anything to worry about. They both came rushing home for a few days and I think it was helpful for them to see that things weren't at Defcon 1 and that I really was doing ok and not just putting on a brave face for them. Since then they've had a few wobbles (my surgery was on my younger daughter's birthday) but are generally now doing pretty well.

I'm HER negative but very strongly ER positive and my sentinel node biopsy following surgery was clear as were the margins around my lump so I went straight into radiotherapy (currently day 3 out of 5) but I'm still waiting for the Prosigna genomic test results which should confirm that I don't need chemo. I'll then go onto hormone therapy, most likely letrozole.

@LemonDrizzle10 so far I’ve been much better on EC - I had every side effect going on the paclitaxel and having it weekly meant very little time to recover between treatments. Everyone is different though and even at it’s worst it was all fairly manageable

@TopOfTheCliff @bringonyourwreckingball
thanks for the info - I’ve had a lot of the EC side effects. I’m hoping this has prepared me for paclitaxel. Weekly sounds very tough going - so glad you found it manageable.

The sunset looks fantastic!

Thanks to everyone on here, you get me through each week. I might have a little bit of wine tonight.

Everything I asked her she said there was no evidence for or against my oncologist was like this, it’s frustrating, I can read the bloody evidence, give me something from your professional experience. He knows that I’m someone who can sift and evaluate levels of reliability of evidence, in the end I really made all my decisions myself from my own reading. A nurse from a charity said to me something like they don’t leave you with a decision they leave you with a dilemma!