Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@EachandEveryone take it easy and do keep yourself socially busy if you feel like it!

I'm a little ahead of you @MeowSplat, everyone says the waiting is worst and they're right. Hang in there. I have triple negative breast cancer and am waiting on the results of the tests for the BRCA genes but that seems almost incidental at the moment.

There's a lot of kind people and useful advice here, I have benefited hugely from the thread.

Waving to @MeowSplat sorry you’re here but there’s good support to be found from those in similar situations.

@MeowSplat hello! Sorry that you’re here but you’re in good company.

I was diagnosed end of aug and am now 4xEC chemo done waiting for the first of my 12 paclitaxil.

any questions we can help with let us know. I’ve recieved a super amount of support from the gang here. Xxx

Hi @MeowSplat (love your username!), sorry you find yourself here, but people are helpful and supportive. Like @ememem84 , I was diagnosed at the end of August, today I had my last of four EC, then moving on to 12 paclitaxel, with a Phesgo injection every third week (and that injection goes on every three weeks for a year). Looking at surgery end February/early March (found that out today).

Am home, and have had some sourdough pizza and a banana for dinner, and not feeling too bad so far 🤞

Well done on your last EC@BatshitCrazyWoman
hope you can muddle through ok and will find pax more tolerable.

I was diagnosed in July with hormone sensitive breast cancer, had a bit of a wonky pathway as there were not clear margins from my lumpectomy, then not clear margins from a further op to take a bit more. I then had a mastectomy and reconstruction which is healing well - 5 weeks today! I started chemo a couple of days ago and am on paclitaxel x12 to be followed by ec x 4. I have an osteoporosis drug infusion to be given at points through treatment and then six monthly afterwards. I’ll also be on five years of hormone suppressants.

The support here has been amazing. I’m still learning what all the terms mean but someone is always willing to help.

@MeowSplat just to introduce myself - diagnosed with grade 2 lobular HER2+ BC in July, on TCHP chemo 5 down out of 6, op in Dec, hopefully lumpectomy. Tumour has completely shrank, oncologist said “that’s a remarkable response” but 2 maybe 3 lymph nodes affected. MRI to plan surgery in two weeks, then surgeon appointment. Hoping it can be done before Xmas. I just want this fucker out of me now please!

My amazing lovely SILs both had BC a few years ago and have been wonderful supports. They’ve been great at talking me through chemo and provided me with some answers to the pastoral questions that I was too scared to ask others. People come out of the woodwork for you and one of the positive things about this shitty experience is that some friendships have strengthened and I’ve been amazed at others generosity with gifts and time and childcare. Some people don’t get it, and some can’t deal with it, that’s fine too. They’ll be there for you in other stages of your life ❤️

Has anyone's sense of smell heightened dramatically since they started chemo? And some things are just disgusting-smelling, when normally you'd barely notice them? A big box of Persil washing powder is now sealed inside two bin bags, as it was all I could smell when I was downstairs 😂 Have switched to Daz, which is inoffensive to me. A bottle of green Fairy Liquid has been rehomed as it was like washing up in strong perfume. The yellow/lemon one is fine.

Hi, and hello and thanks to everyone else who has said hello and provided reassuring words!

Littlecaf, it is interesting to meet someone else also with lobular breast cancer, although I am very sorry you are going through this too! We are in the minority as breast cancers go, as I understand.

I am told that mine appears to be only 10mm, however I do not really believe this as it is seemingly in an area some distance from my nipple, but my areola area is also starting to pull in.....having read about how lobular cancer grows, I'm genuinely expecting them to find more near the nipple, especially as nothing at all shows up on mammogram and just a slight hint of something on ultrasound, and lobular cancer apparently doesn't appear to show up well on standard imaging. I will of course be DELIGHTED if I'm wrong, but would much rather prepare myself for the possibility, as it would be awful to go in expecting to hear I only have a 10mm mass and be told it is more....

Waiting is THE WORST....I never have any patience normally and it is being enforced now in a very bad way! Just massively impatient for my MRI date.

I have started tamoxifen in the meantime, which I am very grateful for.... no side effects yet but it is early days.

I am seeing the genetics people on Monday!

I need to tell the kids soon - mine all have additional needs of some kind, and I'm honestly dreading it, more than any other aspect of this I think!

Husband is being brilliant and let me sleep until 11am today, then brough coffee.....I really needed it (both the sleep and the coffee!)

Is anyone else keen to just go flat, no lumpectomy, no reconstruction? I've considered this in quite some detail for years (because there is so much breast cancer in my family) and have always known this is my strong preference (hopefully with awesome tattoo there eventually!) If they would agree to take the other boob too so much the better as far as I'm concerned, especially given that my current cancer is invisible on mammogram and I have strong family history.....but that seems very unlikely currently, unless the MRI shows anything there or they identify a genetic mutation. I will however keep asking!

So after what feels like a never ending journey I MIGHT have reached the start line.

After being diagnosed with a 3cm tumour, grade 2 HER negative in my right breast they found an area of concern in my left.

Was referred to Cambridge for MRI and biopsy under a specialist team, they couldn't find anything so no biopsy and referred back to original hospital.

Consultant radiologist and his team were astonished it wasn't found.
So last week he tried again with ultrasound. After ten minutes of prodding he found it, punched the air and said 'take that Cambridge professor'. He was very pleased with himself.

So I meet with my oncology consultant on Tuesday to get results of biopsy and hopefully we can go forward to the operation on the 6th.
Whether she operates on one boob or two I don't much particularly care at this point.

It's the third date I've had for the operation and if this doesn't go ahead for some reason I don't know how or if I'll cope.

I know that the op is just the start but at least to be in the race is better than sitting on the subs bench for months!

It’s nearly chocs away time @drivinmecrazy Each step where we get some progress is so important. I really hope the surgery is to go ahead. Bloomin awful with the delays - I found my resilience was getting stretched as I approached my third op, which helped with the decision for full clearance as I couldn’t face going back for a fourth time. Each op was manageable anaesthetic and pain-wise.

fingers crossed for the meeting on Tuesday. 🤞🏼

@MeowSplat the waiting really is the worst but at least they have started some treatment. I did strongly consider going flat on one side but as the remaining one is largish I was concerned about the imbalance and impact on neck and shoulders. Ultimately, having considered flat I knew I wanted a reconstruction and was in the fortunate position that it was possible. It’s different from a “real one” and definitely nothing like a boob job in the glamour sense but I’m pleased with it. I’ll get a nipple tattooed and will get a tattoo or more just for me on other scars to celebrate my journey. I’m thinking of cherry blossom as that represents spring, which is when I hope to emerge - naturally, I’ll have to wait for after chemo for this!

A better chemo day for me. I was extremely tired after picc and first paclitaxel and somewhat nauseous. We’ve had a ride out in the car today and a short walk. It’s sunny and that makes all the difference.

Any tips for sore mouth and tongue? I’ll mention it to my nurse next week to see if they can start me off with something so it doesn’t get any worse (eg nice mouthwash).

Thank you.
It's so frustrating at the moment.
But hearing all of the stories of those of you who are already treading the path is both comforting and educational.

I've a lot to learn but I get such a huge comfort from reading these posts even though I'm not in a position to contribute much at the moment.

TBH most of these posts might as well have been written in code but I'm sure I'll catch on eventually.

It's still a half foot in and half out for me at the moment.
I have breast cancer but don't feel able to contribute because I'm not having treatment.
Probably the worst of both worlds

Hopefully you soon won’t have bc, @drivinmecrazy but will be on whatever treatment they decide is best to keep it that way.

I cannot believe how our lives have turned on a sixpence. All we can do is bide time to get to the treatment stage and our job is, as a wise person on this thread said, just to turn up so that they can help us get through this.

We’re all here for each other. This too will, I hope, pass.

@MeowSplat your diagnosis was exactly the same as mine, except I found a lump (rare with lobular, sure you knew that!) then had a mammogram which didn't show it as an area of concern, then an ultrasound which did and biopsy followed. ILC grade 2, hormone positive, HER2 neg confirmed. I then went for an MRI which showed another (very, very) small lump in the same section of the breast. They didn't biopsy that but just planned to take it out during surgery, which they did and it was also ILC.

My wide local excision/ breast conserving surgery took place 31 July. No lymph node involvement. I saw the oncologist who prescribed me hormone treatment therapy (tamoxifen) which I've been taking almost 2 months now. Side effects at first now pretty much disappeared/ I also had 5 days' radiotherapy which I finished 2.5 weeks ago. Feel pretty ok, a bit tired, a bit of swelling on my boob. Wishing you all the best - I know waiting for the MRI is horrible. You just want to get on with it but it's almost the worst part of it really as you don't have the plan. xx

Thank you so much for sharing all of this, especially as we have/had the same type!

Really glad you had no lymph nose involvement....that is my fear... the waiting is just awful.

I haven't had any side effects from the tamoxifen yet but it has only been three days.....really hope I'm not suddenly hit with anything horrendous!

Again, I really do appreciate you taking the time to share your own experience!

You're very welcome! When they did the ultrasound did they hover it under the armpit area too - not that that's conclusive about lymph node involvement but it can be an encouraging sign. That's what the radiologist did and said at the time, but I still worried sometimes mind you. Hopefully your MRI and surgery will be soon. The waiting is the absolute bugger! (Glad no side effects tamoxifen too and great they started you on them pre surgery. Not sure why they didn't with me!)

@PaperbackWrighter They did scan my armpit area with the ultrasound and it LOOKS clear, but I probably won't totally believe it until after surgery/full checks...... obviously hoping for the best though!

The waiting really is hard. I think I partly got the tamoxifen because it was so obvious I felt the need to be doing something and was struggling with the wait..... I definitely got the impression the consultant wasn't convinced there was clinical need, but the breast nurse pushed for it for my mental wellbeing as much as anything.....either way I really am grateful, especially as I ended up waiting over 4 weeks from seeing my GP to the breast clinic referral 😫

Genetics tomorrow.....will be interesting!

Oh and I think they took extra pity on me psychologically because my mum was diagnosed back in the '90s with an aggressive breast cancer discovered very late, and died very soon after.....may well have been a totally different story now but obviously it really isn't helping me to cope with all the waiting! All I want to hear is that mine definitely isn't the same situation as my mum's.....

@MeowSplat one thing to remember and keep repeating is that everyone’s is different and treatments have moved on - something I find a bit frustrating when talking to some people. I purposely haven’t told my DM all of the details of my diagnosis because her experience of friends having it was back in 1990s and while we are close, she does have a tendency to over react. My oncologist was so careful to remind me of this (and both the BC nurses) so do guard yourself a bit from worrying too much. I’m so sorry for your loss ❤️ but this is a different time, it will be ok.

I second this. 20 years on there’s been so much progress. I’m so so sorry for your loss but please do not compare.

sending love.

I also had lobular diagnosed in Nov 21 and am now 2.5 years clear, had 2 lobular and one lcis and in 1 lymph node. It was a tough year of treatment, with 2 surgeries, then chemotherapy then radio, chemo the hardest by a long way for me then Tamoxifen for up to 10 years and had my delayed diep on 17 September but life is great again. Only thing I would caution is they won't let you have surgery until you've not been taking Tamoxifen for 4 weeks at my hospital due to blood clot risk so just be careful it doesn't delay surgery.

Hello ladies- Introducing myself to this club I never wanted to join. I am a week on from diagnosis. I'm 40, have a DH and 3 little girls under 10. Noticed some breast changes in July, went to GP and referee to breast clinic. Mammograms and Ultrasounds clear, left reassured. They reckoned lactation related changed as I'd stopped bf in Apil. Massive relief. Noticed more changes in Sept, went this time via work for convenience and popped to the clinic after work Tuesday expecting to be told again all good, that I was being over cautious due to my mums diagnosis - but the consultant found a lump under my arm during the exam and had that area specifically scanned & biopsied and here I am. Everything is moving fast, I have healthcare from work and I've already had a PET scan and MRI and been told it's Invasive Ductal Grade 2, Stage 3. I don't know the receptors yet. I have my first oncology appointment tomorrow.

My mum has Stage 4 lobular ER+ HER2- with bone mets. She's a year into treatment and whilst she's tired and having a lot of eye infections she's doing pretty well all things considered.Being diagnosed a year after her means I know much more than I would have - and was so scared mine would have spread.

I felt so much relief being told mine is still curable - focusing hard on that. The last week has been so overwhelming. Some great moments with the kids but sleep is broken, my mind is spinning and lots of breaking into tears in front of strangers oddly. Hoping that eases off, it's damned difficult!

just reading up on your stories now - I have never felt more that I need to connect with people who understand this and how it feels to have this bomb go off in your life. Xxx

@Flibberdigibbit it all does feel so surreal, and the flipping between 'it's nothing concerning ' to 'it's cancer' is horrible. And we all understand that here. Keep posting and venting, as there are women who are through their treatment (like @Penguinsa and @GrannyGoggles ) whose stories really help 💐

My heart goes out to you Flibberdigibbit. You are in a very particular, v tricky spot; very young children to protect, and your mum’s diagnosis means you know things that are frightening and worrying.

Hold on to that word curative. Being overwhelmed, tearful, mind spinning is all part of the deal. It is a bomb going off, as you say, with lots of little grenades landing at your feet that you then get to chuck into other people’s lives.

The beginning bit is so hard, so much uncertainty, and rapid changes. One thing I learned was that you have to go with the process, and try (in vain in my case) not to panic. A complete diagnosis and treatment plan can take a while to evolve. Not too much googling, avoid situations and people that you know won’t help, and being very, very kind to yourself and KBO.

You have found a good venting space here, and a rich source of hard won knowledge. Ask any questions you have, someone will have been through it, and will be able to empathise and support.

Hi @Flibberdigibbit so sorry to see another one here but you’ve found a good source of support indeed. I’m so sorry for all you have on your plate.

Absolutely what everyone says. When you have a plan it will be easier and do not google. Well don’t for checking and pushing to be seen. That word curable is so important. One day at a time.

@MeowSplat you’ve had it so hard, I am sorry. Treatment has moved on enormously and outcomes are so different now. Even the treatments we are currently experiencing have outcomes which are better than many of the stats as things improve and are finely tailored to our needs. It’s incredibly hard though when a very difficult trigger seems to be repeating. Again, a day at a time, the plan and more clarity will arrive.

After an intensive few months I’ve had a phonecall with a surgical breast nurse this morning (unexpected but routine) more or less signing me off, saying unless I need to call them the next contact will be after the mammogram on my remaining breast (ouch those words hurt!). It’s weird having been in so frequently (3 surgeries and then a few issues with leakage) to “see you next year”. I did argue on the mamo date though as my consultant had said a year from the diagnostic one. She tried to date it from the mammogram which checked the position of my Magseed which was over a month later - I’d rather be checked May than June!