Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@LemonDrizzle10 they put this want over you which I think detects if you are carrying anything untoward such as radioactive material or explosives. I had the paperwork with my diagnosis and treatment plan on so they thankfully let me through okay.

@lucysmam yes to the dry skin. We’re photosensitive too - need to be really careful in the sun this summer. I’m just about to smother myself in factor 50 before doing the school run. Sunglasses on too.

@LemonDrizzle10 thanks, I knew about the photosensitivity - hadn't expected to tan from just pegging washing so lesson learned there & will apply sunscreen before I peg this morning's load out. For some reason I thought more about if I were actually sat out in it or going somewhere.

I didn't know about the dry skin though. I'm guessing that was on the sheet of side effects I sort of read in a haze when they admitted me for the first round of chemo so I'll get that back out and make sure I haven't missed anything else!

@LemonDrizzle10 I was told that you're not radioactive enough to do any harm so cuddle away! I think it's just pet scans you're told to avoid kids and pregnant women for a few hours after.

Must admit I was slightly bemused when on the machine and the song "radioactive" came on...

@lucysmam yes, my skin was absolutely dreadful on paclitaxel. It’s back to normal now.

@Atreus I’m going to be bold and suggest that you might have already won the award for “stupidest hair related comment received” this week.

@LemonDrizzle10 I asked if I could still cuddle DD after RT and was told it was absolutely fine. It was the nuclear medicine stuff with the dye where they told me not to for a set period afterwards, can’t remember how long it was but I remember feeling guilty as she was so tiny then, 5 months old.

My quest to clean up my diet continues. I’m reading a book about Ultra Processed Food. It’s grim but compelling reading. Just came across this bit which was interesting. I don’t blame myself for my cancer and I’m not looking for an answer to “why me” (highly unusual for me as I’m great at beating myself up) but I am interested as to why breast cancer is now 1 in 8 whereas in the not too distant past it was 1 in 25. Better detection can’t account for all of it, something has to be going on surely?!

@lucysmam my skin was awful on paclitaxel and eventually started peeling off on my elbows, wrists and feet. A lady I met on the assessment unit recommended Weleda skin food and it was amazing, healed everything up in days.

@bringonyourwreckingball it's my elbows, tops of my feet, and shoulders that are worst. They feel almost scaly. I'll have a look at Weleda now while I finish my coffee, thank you.

I used o’keefes 24hr cream in the yellow tube and it’s been fine. I use factor 50 and I still manage to catch the sun!

Thanks everyone for answering my question - DD would be really upset at no cuddles- she can’t sleep unless she’s touching me.

I got the weleda skin salve that was recommended on here - brilliant stuff. Found everything cheapest on eBay.

I didn't get dry skin on Pax. I was very strict at ensuring I drank lots like 2 to 2.5 litres each day especially on chemo day though before chemo, might have helped though not sure. I would maybe raise with your team at next session and see if they have any advice. Though side effects for vary by person. Like I had no nail issues which maybe partly icing them in chemo with frozen peas etc but I also had the world's strongest nails to start with. Hope you can find a solution.

That's interesting @Silkierabbit , I do drink a lot of water - usually about 2L of actual water and then either a couple of teas or coffees depending what I fancy. I'm actually heading there soon for bloods so will ask while I'm there and see what they say.

I found it worth asking and also if you have a dry mouth mention that, my dentist said its very important for teeth to have that seen to ASAP, a dentist well a private one at least can help, it's something like replacement saliva, sounds lovely. And the extra fluoride toothpaste. My dentist was actually really knowledgeable on cancer. The oncologists generally know best but can be like goldust to see but often the nurses if not sure will check.

I just watched the Sarah Beeny documentary, I wasn’t sure whether I was going to be able to cope with it, but actually it’s really nice to see your reality represented, or something like it (although I had to go through it without a partner and I had to work to support myself all the way through, I wondered whether I’d find it irritating for that reason, but I didn’t). Same for the Julia Bradbury one and the Hannah Fry one too. Though not wishing cancer on anybody.

However, I think it did made me realise how traumatic the whole thing has been and how I haven’t really had an opportunity to process it all. It’s still feels unreal, I don’t feel like the type of person who gets cancer, which obviously means nothing as I had cancer!

I’m not feeling great at the moment either, I’ve got my first post-chemo scan next week, and I think that’s freaking me out. Not just the prospect of them finding something but the stress of thinking they could call anytime to give me an appointment, which would be bad news. Or the dreading the post thing. In the meantime, my DM needs stuff that I just can’t give her. I’ve got a GP appointment next week too because all my bloods are still on the low side. I don’t seem to be great at finding the time to rest and I’m sick of the night sweats. Having said that I’m taking the day off tomorrow to go to the Lido with a friend whilst the weather is good!

Hi @Peppapigboresme sorry you’re here. Yes it’s all shit, especially this first bit when you don’t know what’s going on, if you read the thread you’ll hear lots of us say that. I had endometrial with a tiny spot of ovarian, but there’s plenty of posters with BC who are v knowledgeable so drop in as you need to to vent. We sometimes talk about other stuff too!

@Peppapigboresme so sorry you're here, but glad you found us. This was exactly my diagnosis earlier this year. I promise you the waiting is the absolute worst part of all of this...and while you're waiting, this is the best forum/group of folk to hang out with. Seriously...no soppy looks, no well meaning suggestions to eat kale and never let sugar pass your lips ever again, just a group of fabulous people of all ages, backgrounds, different types of cancer, at different stages of treatment, who all just get it and can offer the best support, advice and outlet to vent/cry/rage/eye roll/laugh x

Welcome Peppapigboresme So sorry to hear it turned out to be cancer, I was on your other thread and really hoping it wasn't.

I am grade 2 invasive lobular cancer hormone positive, in 1 lymph node though first scans clear, 1 x 5cm cubed lump, 2 lump of 17mm. A pea sized lump is relatively good as cancer goes and grade 2 is average for speed which again is OK. You should hopefully escape chemo with that. You will likely have surgery but I would imagine a lumpectomy which is the smaller op where they repair you to look the same and its day surgery then maybe a weeks radio which is actually very easy just lying on a bed for 5 mins then the lovely hormone tablets. Invasive ductal is better at showing on scans than lobular which is good, a lot of lobular patients get nasty surprises at surgery as it grows in a spiders web then forms a lump at end. Obviously it all depends on surgery results but pea size could be stage 1 and caught early or just into stage 2 but both have very good outcomes. It'll just be a difficult few months. So sorry to hear about your daughter and her just being 3, really hope its stage 1 for you and survival rates are close to normal population. I am not sure about another child, I think you can but have to come off Tamoxifen and obviously with a hormone fuelled cancer there's a risk but they can discuss that with you. Or some women do IVF and freeze eggs. I was late 40s on diagnosis so passed that but do have a non-verbal asd child as well as one doing GCSEs during my chemo.

I've only watched about 10 minutes of the Sarah Beeny cancer thing, I find the TV cancer things and isn't it wonderful how this person had cancer and remained happy throughout and running marathons annoying. It wasn't too bad though she seemed to have much faster treatment than average and free wigs, none of those here.

Hi @Peppapigboresme welcome. I have the same diagnosis as you, I was diagnosed on 20th April, had an mri on 29th, got the results on 4th May and had to have another ultrasound to look at another bit found in the same breast. Had the second ultrasound on 22 May with results 1st June. I opted for a mastectomy and that will be done along with an immediate reconstruction on 28th June. Sorry for all the dates but thought it might give you an idea of timeline although obvs every hospital trust is slightly different and each test you have determines your path. What is common for everyone however is the waiting, you wait and wait and wait and then wait some more, for me it’s been one of the worst things so far. Hope you don’t have to wait too long for your mri x

@Peppapigboresme Of course! I was diagnosed after a routine mammogram (I'm 53) with a 17mm invasive ductal carcinoma at the end of Jan. Ultrasound showed no lymph node spread and the initial biopsy told me I had a grade 2, strongly hormone positive and HER2 negative cancer. (The grade refers to how the cells look under the microscope, rather than any indication of spread). I had a lumpectomy and sentinel node biopsy a couple of weeks later at the start of March and the margins and nodes came back clear so was told no need for chemotherapy. The surgery was very straightforward, a bit sore for a few weeks but very manageable. I then had 5 days of full breast radiotherapy in April. Again very manageable and my skin held up well and I was due to start letrozole (anti-)hormone therapy for the next 5-10 years. As my prognosis was looking good, they didn't initially want to do a genomics test which gives a better idea of future recurrence risk but I felt a bit unsettled by not knowing (I'm a scientific person and like to know all the facts/data) and so they eventually did it. And I'm so glad I insisted as to everyone's surprise (including mine) it came back with a far far higher risk of future spread than anyone expected. So now I am having chemotherapy with the aim of reducing future risk rather than needing to treat anything that was initially there as that was removed by surgery and then zapped with radiotherapy. I'm one cycle down, 3 to go and, whilst getting my head round needing chemo when I was initially told I didn't have was a bit challenging, so far it's been better than I expected. Again the waiting bits are definitely definitely the worst. Once you have a plan of action, it's much easier.

@Peppapigboresme welcome to the thread none of us want to be on.
I have had two ductal carcinomas in three years. Next week will be the third anniversary of my first diagnosis. My first was a 22mm grade 3 IDC and as it was triple positive and I had a lymph node affected I had chemotherapy first. As @Silkierabbit says if you have a hormone positive her2 negative cancer you might get away without chemotherapy. My second cancer was a 17mm grade 3 IDC triple negative aggressive little bastard so I qualified for chemotherapy again. I’m just coasting towards the end of treatment, three months left before I’m done. It’s all very trying and unpleasant but it is doable and we can cheer you on and explain anything you need to know.
Good news today on the BBC:
https://www.bbc.co.uk/news/health-65882229

Ive just come in from seeing Harry Styles, my friend wanted to go. Thats my excuse😃. He is very easy on the eye bless him. I had a shandy and one g and t. I did think to myself, only one cycle left starting in ten days. At what point can I say sod it, Im going to have a good drink and forget about picc lines tingly hands and feet for awhile? Or do we just plough on?

ive noticed my legs really ache just coming up my stairs, is this normal?

@EachandEveryone what do you mean by normal? If you have been to a gig then aching legs would be normal. Likewise if you walked a long way today. It’s unlikely to be anything sinister just tired muscles.
Today was my most exhausted day in three years. I did absolutely nothing useful but read a Kate Mosse book. I hope the fatigue is not going to worsen with each round of Cape or I will be comatose by July. I have some new Sea Soul Blessing oracle cards which amuse me. Today’s was Peace and extolled the power of resting which was surprisingly apt. I’m going all woo 😂