Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

IIIC is still considered curable. New thinking around IV is that in some instances it can be treated as curable if it is contained in small amounts in some places.

I had an axilla lymphnode that was quite large, but they didnt find cancer in the upper levels where they expected to find it. I worked with a PT, did my exercises, and do my strength training/regular cardio exercise and I have almost normal range of motion and very slight numbness on the outside of my arm and no lymphadema, though I keep an eye on it.

Essentially you are back in the hell of pre-diagnosis so until they know exactly what they are working with, its tough to get your feet under you. Its also massive fear of the unknown and lack of trust in your body. If this mental state continues to persist for weeks on end, you should look into getting some therapy in order to better cope.

Hi @Tryhardermum just wanted to add my experience in case it helps.

Diagnosed last Easter with her2+ er/pr- bc with node involvement. Was told it was aggressive and that some lymph were sizeable on ultrasound. I had chemo over the summer, mastectomy with full clearance in autumn and radiotherapy over Christmas.

I had a complete response so will never know how many lymph nodes were affected. I can't change what happened but I can choose not to try and think too deeply about it. Instead I try consider that the cancer was 'caught' there.

I have scar tissue issues and mild lymphedema. I also have numbness from the nerves being cut and some limited mobility from the scar tissue. This was a personal response I had rather than a normal outcome. Just the way I am. I still work with a brilliant physio and wear a compression sleeve for exercise. None of this particularly bothers me or interferes with daily life. Currently sat by a pool watching my dc's run around and more concerned about how shocking I look in a cossie!

Oh and was always told I was being treated with curative intent.

I've just read my response back. It's not intended to be flippant at all. The period after diagnosis is really difficult. It's scary and unsettled. What I was trying to say is that it does get much easier. This summer to me feels a world away from last summer.

I used the helpline at BCN a couple of times when I had questions I didn't understand and found them to be very good. Lots of handholding and help here too. Easier said then done (and I know from experience!) but try and take a day at a time x

Thank you, guys, for the support and the positive stories-they really help. But r scared about the risks of an axilla clearance and not being able to drive again, as well as chemo side-effects. Also, why clear all levels of nodes? Feeling that perhaps I need some pharmacological support now, as I can barely go 10 minutes without breaking down. Sertraline seems to be a common option, but I’ve never taken antidepressants before so don't know what to expect: how long before they kick in; any side effects; do they r work? Would appreciate any experiences. Thank you all, again.

Just to say that I’ve read your posts and I’m thinking of you.

I’ve needed psychiatric support after my diagnosis, well not even that truth be told, I needed it from day one and all I can say is that the medication and help I’ve received where I lived has been a god send.

I don’t know how a person quantifies a problem with their mental health but it would be safe to say I had a complete and utter breakdown on the examination couch the first day in. If you do a search on my name I have explained it under this username these last few weeks. That and a few other names over the last few years.

Needing medication (coupled with some kind of therapy) isnt a weakness. It doesn’t mean we’re not brave. It doesn’t mean that we’re not coping. It really does only mean that it’s all been such a shock to our system that our brain needs a bit of a helping hand balancing chemicals in order to get back on an even keel. Actually though after reading that last bit back I think I much prefer being described as bonkers.

Please don’t shy away from something that could really help you feel better and able to live a better day.

Ps please feel free to ask about medication.

I started off on hard core anti-psychotics 💪🏻 but I’m now on Cipralex. My starting dose of 40mg daily is now down to 20mg daily plus a few donkeys that are still managing to run around without their hind legs and one psychiatrist who’s been on sick leave for 4 months.

@Tryhardermum
i had BC many years ago when I was young. I had vascular involvement and 50% positive nodes. Neoadjuvant chemo, mastectomy with full axillary clearance, more chemo, radiotherapy…

No lymphoedema until now (don’t know why but it’s quite mild).

I don’t think there’s any way you can be anywhere other than where you are right now. But I just wanted to add a positive post xx

Thank you, Jelly, for your kind words and advice about antidepressants. I know I r need them; otherwise, they’ll take me away in a straitjacket (actually, probs not, as there is no nhs mental health service anymore). I was brought up to think that you were weak if you resorted to them, so I’ve always steered clear, which is a shame cos I could have done with them in the past. My gp has been very kind and understanding, which was a nice surprise. I’ll start them after my op tomorrow. Thanks, too, Izzy, for yr positivity. It feels like the end of the world at the mo, so it’s good to hear stories like yours. R appreciate that posters took the time to respond to me.

Morning all, just catching up. Have got today off thank goodness as its DD1's 19th birthday. DD2 is off after her exams and I'm keeping DS off after the heat at school yesterday affecting him. Going bowling later.

I was already on antidepressants when I got my diagnosis the week before Christmas, if I wasn't I wouldn't have coped. I still think the worst time was from diagnosis to the first chemo mid January. That first chemo meant Larry was being zapped at last.

Big wave 👋

HC
X

I was sort of okay. Coping-just. The stinger was finding out the mass was twice the size and had spread to a sentinel node. I r didn’t see that huge change in diagnosis coming. I wish I’d gone to the gp earlier for meds, but I kept trying to be ‘brave’. That they might help prevent me dashing headlong into that pit of despair gives me some hope of functioning ‘normally’. Have axilla clearance today-hopefully-which scares the living daylights out of me. Wish now I’d spoken to the gp about some medication to help get me into theatre without wanting to do a runner!!

@Tryhardermum sending you every good wish. Ask at hosp if they can give you something to calm you?
i was diagnosed a year ago, lumpectomy, full axilla clearance, 12 rounds chemo, 3 weeks radio. Honestly the very worst time was not knowing.
driving 6 weeks post surgery, full movement now. No lymphoedema- I’m 62.
best advice is do the exercises religiously, seek physio help, and exercise ( look for cancer specialists) massive help mentally and physically.
take all the help and advice you can. Good luck,.

Just received an appointment for 23rd September to see a surgeon about symmetry surgery. Hope he/she says yes.

HC x

Just popping in to say hi from sunny Spain. Managed to get my last minute 4 day break after all, was very naughty and only insured DP and the kids as I couldn’t get anyone to insure me. It’s been wonderful. Hot and lovely and a delightful break, I’ve not had my usual stream of pina coladas so I can soak up every minute and store it.

Hope everyone is well, I am floating between okay and bottomless horror at the lymph node involvement, I’m just convinced that I’m never going to be cancer free because of this. So sad.

So glad you got away Great

I am no expert on ovarian cancer but I think stage 3 can be cured, but I think with all cancer all you can do is all the treatment they advise (getting a second opinion if necessary but getting treatment quickly) and if you can manage it after treatment exercise can help a bit.

Try So you are feeling so low. I have breast cancer (46mm and 17mm tumours) spread to 1 lymph node and anything below stage 4 is curable for breast and if they have not seen anything on scan that is very positive, mine was clear in scan and just in one. They removed 25 and it would had to have got through all those to get to stage 4. Hope it went OK today. My movement in that arm is fine, did 2 hours kayaking with it last week, can swim OK as well, my swimming is more affected by having one breast off as it makes me lopsided. No lymphoedema though radio to go but do the exercises every day and that helps a lot.

Happy 19th Birthday to you DD HC

I had my CT scan for radio and start radio soon in a couple of weeks or so, dates tbc.

Love to everyone hope you are surviving this heat been 41C here ouch, living off drinks with ice cubes and Ben and Jerry's ice cream and calippo lollies. Lucky DH is French and much better at withstanding the heat and very useful at collecting ice lollies and ice cream, lucky as well we live next to the shop. Hope you are OK MrsWooster

Try I am a very anxious person and I got through most of between the surgeries / results thing pretending it was not happening and watching trash TV like below deck etc to take my mind of things. Probably not the healthiest method but just do anything that helps. Macmillan do BUPA counselling and meds may well be worth trying, I did not have any but was a complete wreck through it right until end of chemo. Now I have done chemo I am at the omg what do I look like stage with one breast chopped off, hair which about 1/3 survived chemo with my frozen peas and face which has just stopped swelling after steroids. And feeling what will be, will be about survival. Can't do anything other than do treatment, which I have done and worrying is just wasting my energy. And trying to get nice things in when I can, nice trips out.

I was already on antidepressants when I got my diagnosis the week before Christmas

Id been on them a couple of times over the years. Once following having a baby and then when my marriage of a lifetime broke up. I’d only been off them actually for about 18 months when I got my diagnosis and funny enough my girls had said to me at the time mum, why don’t you consider a lifelong maintenance dose but I said no. This time though there will be no coming off them for me though I am working my way down to a 10mg maintenance dose. I suspect it wouldn’t take much to tip me over the edge again if I wasnt medicated.

I hope everyone is doing well with the heat and that Tryharder is through her surgery and doing well.

HC - are you excited about your surgery?

Hi, guys, had axilla clearance this pm. I’m feeling pretty ropey but just took a look at the surgeon’s post-op notes. Looks like he could see a spread in two nodes, but all have gone off for histology, so could be even worse. I knew it wasn’t good news, as he said he would only take out level 3 if r had to. Devastated, as now on to stage 3 cancer. Apologies for putting a downer on things…

@JellyBellyNelly yes I am, was promised it a year ago so happy for it to happen x

You’re bound to be feeling ropey, and I so sorry that notes weren’t good.

Rest up, take all the painkillers, demand lollies and ice-cream from visitors and try and do the physio even though it hurts like hell the first couple of days.

Hopefully you’ll get to speak to the surgeon tomorrow and they give you a bit more detail.

Thank you, FairyBatman…

It’s ok, you don’t have to apologise.

We’re here for you and you can say what you like.

You’ll feel like a new woman. 😊

@Tryhardermum i am sorry to hear that. I was also diagnosed as stage 3 last week. It’s horrific isn’t it. It feels like a really advanced stage. No advice for you as I’m still in a tailspin myself but I know how you are feeling.