Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@dancingwhilstfacingthemusic and @Penguinsa Thank you both so much for the tips/advice/suggestions regarding surgery and potentially helpful things to buy /set up in advance. I have taken screenshots and will most definitely refer back over the coming weeks - very much appreciated!

I'm normally very last minute when it comes to Christmas, in spite of my best intentions year after year, but certainly won't get away with that this time..... I've done quite a lot of shopping/online ordering already in preparation, and will be as organised as I possibly can beforehand!

@MeowSplat my tumour was a different size on the MRI than mammogram - I’m under 50 so have dense breast tissue so harder to see on mammogram - although it was smaller! It was all hidden under my nipple. it’s gone now (amazing chemo and herceptin, thank you!) but mastectomy booked for mid Dec. Originally they also said was only in one lymph node, MRI showed three - again all gone now. I think that it’s helpful to get multiple scans to confirm if it’s slightly unclear although it is scary at the time.

Thank you also for others for sharing hospital bag lists - I think mine is a day surgery but will still need some of those things. Theres another list here on the Cancer Research page - https://www.cancerresearchuk.org/about-cancer/breast-cancer/treatment/surgery/before-your-operation

Interestingly my aunt (she was a chemical engineer working for Astrazeneca before retirement ) worked on the development of Zoladex in the US in the 1980s/1990s- I remember the blue and white branded sunglasses and purse she had in her car. She also worked alongside the team on the development of herceptin - although I think in a side capacity later on when it was being refined in the UK at AZ in the late 1990s. Theres a film (Living Proof) about it I might watch once this shit is all over.

Another post surgery item for your list if you don't already have one is a soft bra. I bought mine from Nicola Jane. The Cancer Research one is particularly comfortable.

I was a day surgery case too, and was advised to bring overnight things with me just in case. It was a long day, in at 7am and out at 9pm and they did offer me a bed but I preferred to get home.

@frostyfingers thanks so much - the Nicola Jane shop isn’t too far from me, was gonna buy some cheap ones (George/Primark) initially then book a fitting there post surgery - they also seem to do online fittings too for those women further away.

@Littlecaf I'm similar (early 40s with very dense breast tissue.....didn't know about the dense tissue until my ultrasound and biopsy though!) Combine that with the already hard-to-see lobular cancer and it is no wonder it is invisible on mammogram......

It sounds like we will be going in for mastectomy at a similar time (I'm booked in for 19th December). I'm currently in full on "prepare for Christmas" mode to try to get everything organised!

(Edited for typo!)

@frostyfingers Thanks very much for the bra recommendation!

I'm still here, silently observing!

My surgery didn't go ahead two weeks ago due to an underlying condition flaring up. I was literally ten minutes from going down.

Had the pre op chat with the anaesthetist and surgeon, before they asked me into a side room and told me.

To say I was a sobbing mess would be an understatement. I even begged to sign a waiver to allow them to go ahead 😂

But the advise was that risk of not coming out of the operation was too high 😞

So I've got these few weeks on increased medication to get it under control.

Next date is the 4th.

My surgeon is monitoring the lump by ultrasound each week and reassured me it's not growing significantly.

But there's still uncertainty about my left. I won't know about that until they've got a deep biopsy under general due to bloody dense tissue 😡

So, I have a question.

I've been told I'll know pathology on both breast 10 days after surgery which is fine.

But then what happens? Can I expect to continue planning Christmas thinking nothing will happen till the new year, or should I expect appointments during the 'festive' period?

they checked regularly during the first 6 months I seem to remember, but once your levels were where they wanted and stable it’s not been checked again

Morning. I’ve been for a coffee with a friend/ex colleague today. She presented me with a huge bag of stuff as a pick me up.

I’ve apparently got enough beauty products now to last me a couple of years……..

she’s a beauty hoarded/addict so I suspect a lot of this was already in her stash. But so lovely.

also the M&S Christmas treats are well worth investigating. Yum.

@drivinmecrazy i am so very sorry to hear this. I can understand how upset you were / are and I hope that the drugs are doing the trick to enable the next date to go ahead. It’s bloody hard preparing and psyching for surgery. Probably worth giving your breast nurse / team a call about your question - it’s reasonable as we all need to prepare ahead. I’m aware that my chemo will be wrapped round Christmas and new year. I have a session due on Christmas Day but will either have it before or just after, same with New Year’s Day. Others are having their blood tests on Boxing Day for chemo on 27th.

some good treats there @ememem84 Enjoy the haul!

I’ve been to the physio today, attached to the breast clinic. This is for a shoulder issue that was triggered by the surgery. Additionally, the physio massaged the surgery scar as I have quite a fibrous area. She also showed me how to massage over the whole implant to help it to settle and to improve how it shapes. This also will help to get any feeling back by stimulating the nerves - it’s a numb lump at present but I’m glad I had it done.

@drivinmecrazy im sorry to hear this. Sending you best of luck for next time - it’s hard to keep on waiting. Keeping fingers crossed for you!

@drivinmecrazy Really sorry to hear this, it must have been incredibly traumatic and disappointing too. I have no idea what happens over Christmas, although I should imagine that if they do operate on 4th then there will be a good couple of weeks recovery period and it might be that they wait until new year, but that's just a guess. I have an appointment on Friday and am expecting to find out next steps then, like you I don't know if that involves anything over Christmas.

I hope the medication is working for you, and will be keeping my fingers crossed that you get the go ahead.

Sorry to just jump in with a massive whinge. It’s very self indulgent of me.
It turns out my planning ct scan for radiotherapy showed some abnormal areas in my lymph nodes. This is after an all clear CT scan post surgery and 6 rounds of chemo (finished 4 weeks ago). Radiotherapy delayed while they make up their minds what to do about it. Trying hard not to panic about it. But I don’t have a good track record with this stuff (sentinel node were 2/4 positive after my mastectomy).
Fingers crossed the oncologist decides it’s nothing to worry about. And I get an update soon.
@drivinmecrazy that must have been so disappointing to have got in the headspace to have the surgery only for it to be delayed at the last minute. Hopefully there will be no issues with the next date.

@Nomorebear I think it is entirely reasonable to be thrown by this, and you are not being self-indulgent by "whingeing" about it. I've been doing lots of stress dumps on this thread and I've had nothing but kindness back so want to pass some of that on to you! It is very stressful to be in a state of uncertainty and to have plans potentially change. I hope you can be very kind to yourself and get lots of support from others while you wait for more info.

@drivinmecrazy I'm so sorry, I can understand how upset you are - psyching yourself up for surgery, only at the eleventh hour to have it postponed, just awful. I feel for you. I hope you get the green light for surgery very soon.

And @Nomorebear - vent away. The uncertainty around all of this is very hard to bear.

Very tentatively, I seem to be feeling .... okay ... after my second pax on Friday. Mouth is sore/odd, I'm exhausted, I've had a couple of nosebleeds and have no appetite, but not feeling too dreadful. Off to a fancy wig place with a friend today ...

I'll be having chemo on 27 December, but the unit is open the day before, when I'd normally have bloods, so it will be a long day with bloods first, then waiting for results before chemo (although some people choose to do this every time). How ... festive 😕

@BatshitCrazyWoman keep going! The nosebleeds are quite the thing, eh? I’ve been putting Vaseline up my nose. Keep asking for the right mouthwash and mouth gel, makes all the difference. Fingers crossed you keep on feeling ok. I have bloods today, ahead of what I hope is chemo #5 tomorrow. The motorway should be clear to the cancer centre once we are out of our snowy village.

My finger pain is less this time, hopefully due to reduced dose and cold mitts. It flared in various fingers and toes after treatment but has settled. I read that vitamin d/ k and epo help with neuropathy.

Hope your wig appointment goes well and gives you a boost. You’ll have Christmas at least, although a long day after festivities.

@Nomorebear absolutely vent away, we all need to At periods during this and no one gets it like the people going through it.

Morning all

Snow day here so I am catching up on thread. Sorry @drivinmecrazy re your surgery but in my capacity of top googler everything I read states some delays are no issue in the overall outcome and it sounds like your surgeon is really proactive at keeping an eye on your unwanted guest.

@nomorebear listen to the radio therapy podcast (I know never thought that would be on my playlist) that liz o'reardon did. As I have to have 15 zaps and I wondered why some have 5. Apparently that planning CT is a big thing and it's normal for there to be quite a big delay between that and starting the radiotherapy as they taylor it to you. We go to defcon 5 naturally but they may just need to adjust the dose or days you have it over.

@batshitcrazywoman my second pax yesterday... we are similar then. I am still riding my antihistamine and steroid high! Down for treatment all across christmas and new year but 23rd and 30th for me. Nurse laughed at me (nicely) when I asked if they stopped for Christmas.. train keeps rolling except for Christmas day. They open boxing day for bloods like yours is too.

And festive it ain't!! Total agreement there!!!

Sorry your surgery got cancelled on the day drivinmecrazy I had that back in August also about 10 mins before due to start and its horrible when you are all prepared for something stressful thinking at least will be over soon then wham more waiting. But 4th isn't too long and once you've been cancelled they are more careful to make sure doesn't happen again. Re appointments after surgery for DIEP I've had weekly ones starting at 2 weeks but they are fairly quick 15 minute ish appointments. I would ask them but might be appointments. They can normally rearrange the date though.

So i had my results from the mastectomy. 2 tumours (as expected) - one 3cm and one tiny one (1mm maybe?). And both confirmed as grade 1. We were going to be celebrating if we got this news - but....

(1) At some round table discussion the oncologists said that they would recommend chemo, as it had spread to one lymph node (as we already knew from the sentinel lymph node biopsy op). They said that it is not behaving like a grade 1 cancer, so they are just a bit worried about under-treating it.
(2) They have also said that I need to have the rest of my lymph nodes out probably - to be confirmed. I thought it would just be radiotherapy, but they said that that might not be enough because my breast cancer was 'multifocal'. So maybe all lymph nodes out, and also radiotherapy to the chest area.
(3) I had a nipple-sparing mastectomy. But they might have to go back and remove that nipple because the 1mm tumour was so close to it.

I have no idea how to feel. Kind of reeling from all of this - it feels like the bad news just keeps coming.
But also kind of feeling like - the prognosis is no worse than I thought. Indeed, the drs had been worrying that the cancer might turn out to be a grade higher than 1, and it hasn't, so that is good. The prognosis has not got worse. It's just that decisions have been made to treat everything more aggressively. Maybe this is good? But honestly the idea of going through all of this and then no-one being willing to say that I am cured is depressing - it's the not knowing I'll be cured at the end of it all that I'm really struggling with.

What should I think about all of this?

(They said the chemo could take 5-6 months!!! And start before Christmas. This is not how I had imagined things unfolding).

Sorry about your news Breastcancer You are entitled to a second opinion on the NHS.

In my hospital they use Predict Breast (use new version) https://breast.v3.predict.cam/tool to see whether worth doing chemo and if it comes to over 5% benefit they do chemo, under 3% they don't and between 3% and 5% they send off for analysis. You could also ask them to send off for analysis for the prosigna test. Its unusual to be treating grade 1 of that size with chemo and especially 6 months chemo. My oncologist would not be. Mine would be doing radio to chest wall, removing nipple and taking all nodes out but not the chemo. Even taking nodes out has gone to radio in the US - I had 1 lymph node positive and all nodes out, no further cancer found. I had to have chemo but I had 3 areas and biggest was 5cms then 1.7cms then LCIS. Obviously there's no way for anyone to know for certain but chemo is harsh on the body. I would definitely at least do a lighter chemo like Pax for 12 weeks which has less risks. Though think I would have gone for no chemo. but the rest of what they advise.

I’m sorry for the bad news @breastcancerpanic although you were sort of expecting it. You must be reeling. I was exactly where you were, with the initial view that it was a 1.9mm tumour, with lumpectomy and radiotherapy mandated. That changed after op 1 didn’t get clear margins and found DCIs, and went pear shaped when op 2 didn’t get clear margins and I was told to have a mastectomy and that chemo was necessary. I held it together in the consult and then wailed my eyes out on the stairs out.

Now I’ve had the mastectomy, I’m getting used to my new body and feel happier that any source of cancer in that breast was gone. My poor nipple. Popped off and sewn back on in the first two ops and then removed with the mastectomy. They did offer me nipple soaring treatment but I didn’t want anywhere else for it to hide.

The chemo was not what I wanted to happen but it needs to be to keep me safer. Because of how the treatments fall, mine will be 5-6 months, then a few weeks to recover before I start back to work.

it’s an awful lot to take in. All I would say is, take it a day at a time and find the good things in each day. We’re all in this in our own separate ways. It is horrible to be here but it will, I hope, pass.

If you can afford it I would also consider paying an oncologist privately for their views. The only thing with this though and the test is it does delay chemo.

The year of treatment when you have chemo is very tough and an emotional rollercoaster and there are some nice days but mostly its rubbish but it ends and then you get your life back. It does take time to build up mentally and physically again but I am 2 years from end of treatment (apart from diep which was in Sept) and my life is great again - just about to start dream job overseas, travelled to places like Maldives, Mauritius, Borneo, exercise about 5 hours a week, appearance is largely back to normal and back to normal BMI like pre cancer. Obviously you never know if stage 4 is going to suddenly hit but I am not going to spend my life worrying about that but I do stay normal BMI and exercise 3 to 5 hours a week as that's supposed to give 50% more chance it won't come back and it also helps with mental health. I hated chemo but if you do have it at least you know you threw everything at it.

@penguinsa and @dancingwhilstfacingthemusic thank you so much for replying.
I haven't yet talked to the oncologist - that is for an appointment next week. It is then that we will officially decide about chemo I think, but the surgeon today seemed to say that they are recommending it, and I had a meeting with a nurse who does chemo who gave me a booklet and talked through it. So I guess I will wait for the actual oncologist appointment before deciding whether to get a 2nd opinion? I'm inclined to go with whatever they say though - I would hate to feel like I had not done everything I could to stop it coming back.
I am so heartened to hear about life after this - the dream job, the travel and the return of appearance (I am vain enough to feel a bit like crying about the idea of losing my hair).
And I like the idea of finding the good things in each day. I need to work out what nice thing to do tomorrow. I will need to talk to work at some point (still on sick leave from mastectomy, but I plan to go back next week... will need to think this all through... and I think I'll need to make a zoom call to my head of department either tomorrow or at least before the end of the week...).

Yes I would wait for oncologist as they will be ones deciding on chemotherapy and how long though if they have given you information on chemotherapy I would assume they are recommending it but the 6 months may not be accurate and it might well be a shorter 3 months course but see what they say. It's a lot to get your head around but it might be best just to get on with it if they recommend it but the option of a second opinion and / or the prosigna test should be available, well the test may or may not be available on nhs. I was given it on NHS, some people pay privately but it does delay things a few weeks.

Re hair there is cold capping which can be offered, I wasn't offered it as went for weekly Pax and they didn't offer it with that, but many chemos offer cold capping which saves some people's hair. Sometimes it fails but can be worth trying. I did my own version of frozen peas on my head under a tight chemo hat and it saved around 40% but in the end the new came in at 100% so over time had to cut the 40% off.

Lots of lovely Christmas lights at places like RHS gardens at the moment which are good. During my chemo I went to see puffins but that is seasonal. Outdoor things are good as low infection risk.