Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Welcome Totheleft. They normally decide treatment based on Predict breast scores https://breast.predict.nhs.uk/tool on the 10 year one if chemo benefit is over 5% generally they recommend chemo, but you can discuss it. I had surgery first and would go for earliest date. I was told at start they may or may not do radio but I think they knew full well they were going to do it and were splitting up the bad news. Radio though at my hospital think BC patients since covid all have 5 day intense, used to be 15 pre covid but they changed dose and made it 5. I found radio really easy, lie on a bed for 5 minutes, that's it. I didn't have any side effects, most people get tiredness.

Welcome @tothelefttotheleft and trust us this stage of panic and not knowing what’s going to happen is the worst. Once you have a plan and some dates for treatment and get into a routine you will feel a whole lot better.
The MDT is the multidisciplinary team of surgeon, oncologist histopathologist and radiologist who get together every week and look at new patients with their scans and biopsies and decide on the optimal treatment for that person taking into account their age, general fitness and other conditions. Obviously a fit 30 year old will get different treatment to a frail 85 year old with a weak heart.
I have had two breast cancers one each side and opted for lumpectomies with radiotherapy. I now have nice uplifted matching boobies, 36C which I am very pleased with at 63. I can still have a mastectomy in Future if I need to.

Keep busy if you can. And ask away anything you want to know. No question is too small or silly here.

I am back in Godzown tonight after a nice trip to Dorset. I’ll attach a nice picture of the River Cerne in my DMs garden which is very soothing.

@doublec

My nipples and areoles didn't get a mention! Charming!

@TopOfTheCliff

Cancer in each breast?!?! What are the chances of that?! I can't imagine how that must have felt.

@Silkiebunny

I seen on another thread or maybe earlier in this one that predict tool being recommended.

Too head in the sand to look at it at the moment.

The pathology report was after my mastectomy. Is yours from your biopsy? If it is, they'll do another should you opt for a wide local excision or a mastectomy. That report is far more in depth.

Unfortunately, it's not uncommon to have a cancer in each breast.

Yeah, I imagine it is still very expensive @doublec ! Such a waste when they are so pricey for the computer to say "no" to the 50mg tablets to make the dose up!

No side effects yet - I've been having hot flushes anyway so expected those to continue.

Does anyone else not have a copy of their biopsy report? I literally have my discharge notes from both hospitals & that's it! Can I ask for them?

@TopOfTheCliff that's a very soothing photo. It'd be a nice spot for a cuppa & staring into nothing in particular 😊

@dotty2

Thankyou for the welcome.

@Octopus45

There has to be one plus to these JJ boobs!

@SummerCycling

At first, I thought I would get away with just surgery and ET. How wrong we all were!

They knew at the outset mine was a grade 3 IDC. I think initially, because the size was small, under 20mm, that was why they said radio wasn't needed given I opted for a mastectomy. However, due to the actual size coupled with it being multifocal and the positioning - it was a little too close to the chest wall - radiotherapy is needed.

The long and short of it is for me, everything has gone a very different way to how they thought it would all go. Am not a spontaneous person, nor do I like change - I like to know what's what and everything go to plan. Ha, bloody ha. Cancer does not work like that.

@tothelefttotheleft

Ah ok, so it says your cancer is Her2 negative. That means we've got different subtypes of breast cancer and so our treatment plans will be different.

But I bet there'll be someone on this thread with the same subtype and similar cancer to yours. There are lots of breast cancer patients here.

@lucysmam Of course you can ask for it - I've asked for everything and have hard copies as well as an electronic copy. I have a big box full of all my paperwork, reports, letters, etc

I didn't get a biopsy printed report, I got results at meeting and then in letters on my charts. Same with oncotype, didn't get a copy but got shown the result.

PS. I'm having three weeks of radio - I'm ER+.

Am having it to my chest wall because there's no breast any more!

@Silkiebunny Oncotype report is surprisingly scant on information. Was quite disappointed by this tbh, I wanted greater insight into which 21 genes they looked at.

Oh! I haven't seen anything either - I think I'd like to see maybe. I'll give it some thought before I next speak to my consultant.

@doublec

That's so annoying isn't it. I completely get what you mean - I like overviews and a global plan, so have also struggled with the way they drip-feed info and keep saying it all has to be step by step. Lucky for me, at least my treatment plan didn't change (it was horrific to see it the day it was given to me, but at least it didn't change). So sorry to hear yours changed like that.

Will your radio be to the chest wall then, presumably? I hope it goes as well for you as it did for me. I had 15 days and felt fine, I could have done weeks more 😂

@Silkiebunny

How interesting your hospital gives all BC patients 5 days radio these days. The hospital I was at for radio (Marsden) gives people different amounts, so I got 15 days as did someone I met there and made friends with, but I know lots of BC patients get 5 like at your hospital.

Radiotherapy was so stress free. The team were really sweet and kind, and lying on a bed for 20 mins was easy. No waiting around or anything and you could even say what type of music you'd like them to put on.

@doublec

Snap! 15 days of radio.

Mine was also to the chest wall, but then axilla different levels, and internal mammary nodes too.

Like you, I had a full mastectomy.

isn't it interesting all of us comparing notes!! 💕

I don't know if all get 5 days but they told me 5 days was started post covid and it was same as 15 before then as at a higher dose or something like that. I know a lot of women were worried about the 5 as it was new. Personally was glad it was 5 not 15 just due to journeys.

I also did Pax 12 weeklies. I had a choice of chemo, about 6 in all, and reading up on them it sounded least worst. Not something would be keen to do again but would make same choice again. Neuropathy is one to watch for and you can get ice gloves and ice socks off Amazon to help with that. I also ate ice lollies and took a coolbox, my taste stayed same. I also got higher fluoride toothpaste from dentist on a prescription private and that helped. Mine took 4 months in end with gaps due to neuropathy.

I got 19 radios. 15 and a boost to the tumour bed for another 4. Lucky me.

@lucysmam , my hospital don’t make it easy to get your report. You have to fill in a paper form to request it. I got as far as getting a copy of the form and then decided that I already knew it was very bad, and didn’t want to know more about the extent of the vascular invasion etc and chickened out.

I had mastectomy and then a full node clearance and then Pax then radio then Tamoxifen and now awaiting diep, appointment tomorrow but slow to get after.

Did 4 hours gardening as outside of house being painted and completely knackered now. I walked 5 miles yesterday for Waverley trip and that was hard on my right hip. Not heard back from CT head which is good, follow up is 9 November and bloods on 6th.

@dotty2 That's shocking you have to fill in a paper form to request it. I told my surgeon on the phone I wanted a copy of the oncotype DX, and my BCN I wanted the pathology report.

@tothelefttotheleft if you are hormone receptor negative and her2 negative then you will be treated as Triple Negative. Very commonly you get offered chemotherapy before surgery for this, and nowadays they are using immunotherapy as well ( pembrolizumab) My TNBC tumour was only 18mm but I still got chemo as it was Grade 3 and a nasty aggressive little bugger.
My 2 cancers were opposites, one TP and one TN. I’m just a freak of nature!
I paid for a gene test and it was negative.
Try not to worry about what will happen. You will know soon enough and it will all work out fine.

@Silkiebunny I love your Waverley picture. I saw her in Oban last year. When my grandpa died 25 years ago he asked to have his ashes scattered in the Hurst Channel by the Needles.in the Solent. My DM and aunt went on a day trip on the Waverley from Weymouth to Portsmouth and when they got to Hurst Castle a lady in a wheelchair got conveniently stuck on the other side from them. They quietly tipped Grandpa over the side. The Yetties of Yetminster were playing cheery tunes and DM won the onboard raffle prize! A day to remember for sure.