Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Panic Tough news for you today, and a whirl of new information about which particular shit choice you have to make.

Could not agree more with @Penguinsa about private consultation if that is feasible for you. Very helpful.

I ended up ‘choosing’ to have chemotherapy because it increased the chance of being ‘cured’. My cancer was aggressive, TNBC so limited treatment options, grade 3, caught early. Like you and Penguinsa I wanted to chuck all that could be chucked at it with the hope of curative.

Chemotherapy is grim. Brutal was word used by my oncologist whilst telling me it was my ‘choice’. But it was doable. And there was some fun, joy and pleasure to be had during treatment.

I would be asking for more information about why they seem to be nudging you to chemotherapy. However, remember whatever questions you ask, you need to be able to hear and live with the answers, however unpalatable.

With cancer it’s all Hobson’s Choice.

Sending love and positive thoughts

Just to add in the hair front, I’m on paclitaxel x 12 and then ec x4. I’m cold capping and so far it’s going well. Even if I lose a load the cold capping helps it grow back, apparently. I’ve a load of friends who didn’t cold cap and they’ve all got decent heads of hair now. I’m also using cold mitts and socks (I sorted these myself).

One of the best things I did was to get my eyebrows microbladed before chemo. My eyebrows are thinning but you can’t tell to look at them.

it will all sort itself out. It’s overwhelming trying to think about it all up front. Once you have a plan, it’s just a case of steadily working though it. I’ve had a couple of dodgy days but otherwise I’m tired but able to potter and do stuff. We are starting to think about “after” and it’s great to read of travels and dream jobs.

Thank you all so much. I just have a few more questions...

• How would I actually go about getting a second opinion? Do I just tell the oncologist next week that I'd like one, or should I try to find my own consultant privately? (One problem I have with this idea is - what would I do with the second opinion when I have it? Apparently at the round-table discussion the oncologists were unanimous that chemo should be... I can't remember if they said 'offered' or 'recommended' - but either way it was already more than one oncologist's view - so I'm unsure what use I could make of another voice saying something else... I just don't know! In a way I don't actually want to make this decision - I want the doctors to decide based on their knowledge...)
• Do you need to 'shield' during chemo? Or before? I am thinking about several things - whether I could go into work in person or just online (if I manage to carry on working at all); whether I can do things like go to friends' houses, go to my brother's for Christmas etc; whether I can visit my mum in a nursing home; whether I can go to a planned music gig that might be near the start of chemo...
• How tired does it make you? And how shit do you feel? I have a book called 'Moving Through Cancer' which suggests that you can(/should) still exercise, and this is giving me hope. In normal times I am a runner, and would love to be able to carry on with this. I have had to stop while recovering from the op at the moment, but when that is over if I am having chemo would I have the energy to e.g. do a parkrun? Or some easy stuff from the start of couch to 5k? Do you feel well enough to enjoy things like a film, a chat, a walk, a trip to a cafe for a cup of tea? I'm just trying to get a sense of what it is really like.

Thank you again so much for this. Sorry that I have gone back into self-centered mode - I seem to need support after every bit of bad news. I hope I'll be able to support others once I have processed this...

On another note, I had really gone a long way to making peace with my mastectomy. The scar is healing amazingly, and though it looks different from my other breast I think that is just the swelling. (I still have the drain in! Hopefully coming out this Friday. That will be 3.5 weeks!). It sounds silly but I have gradually come to see it as that they have not actually removed my breast, but just changed something inside it - at least that is how I have been able to think of it. So I was feeling really fine about it. It is gutting that they may need to remove the nipple, but I guess they will also do some magical job here and everything will somehow look fine? Definitely something to worry about later I think.

@breastcancerpanic
Second opinion;

Do you have a Nuffield or similar private hospital near? If so you could call and book direct, having googled (!) the list of consultants. You could ask your named consultant for a private consultation, so rather than a second opinion, you could have a more detailed, longer appointment, exploring the reasoning rather than getting yet another opinion. The oncologist I saw gave me figures outlining increased survival rate having chemotherapy, the margin wasn’t huge. He was v v clear it was my choice and that he would not influence it. Ask for figures, talk through using Predict maybe? Ask if chemotherapy is unanimously recommended and if so why?

Shielding:

The advice is to avoid risk of infection as you will be ‘clinically vulnerable’, yet another phrase I didn’t care for. I did socialise, but avoided being in confined spaces with a lot of people. Friends and family were aware and sensitive, not seeing me if they were unwell. So, yes visit your mum, spend Christmas with your brother but maybe don’t go out clubbing… Work, hmm, WFH maybe, but realistically you may need to be signed off. Depends on your role and how you respond to treatment

How tired:
That really is a piece of string question. Dependant on how fit you are, how you respond, how you manage yourself, what support you have, what calls you have on your time and energy. Some people are properly knackered, others not as badly impacted. I kept walking, gardening, yoga going. The walks got shorter and slower. Rested in the afternoon. Yes to chats, cafes, walks. Cinema was out for me, didn’t fancy being coughed at. Apple and Netflix came into their own. I was fortunate in that chemo ran from May to October for me, so being outside was easier than it will be in January. The exercise thing is a judgement call, day:day, hour:hour. Push yourself a bit, but not past fatigue into exhaustion.

You sound as though you’re doing well coming to with your post surgery body.

You are NOT being self centred. You are dealing with a complex, life changing situation, with changing information, having to come to terms with disagreeable treatment options. It’s is a lot. Be kind to
yours

PS on exercise, I had conflicting advice. Old school, older consultants erring on rest up, be careful, take to the sofa; younger oncology nurses v keen to encounter exercise as there are lots of recent studies showing significant benefits. Anecdotally, I felt better on the days I had a good walk or did yoga, however there were a few days when I just couldn’t do v much at all. In six months of treating I only had three days when I gave up and went back to bed

And I meant to write be kind to yourself, not yours.

@Penguinsa yoi had some lovely hopeful words on the previous page - thank you. I’m on my last chemo hell week and feeling awful today so any encouragement that life does return is welcome.

@breastcancerpanic I think we need to analyse all the options before we make decisions in anything in life, - do you have a breast care nurse who can help you make sense of the diagnosis and treatment plan? From reading everyone’s messages plan changes are all too common once the doctors get more info from results - but I’ve tried to thing of it that it’s evidence based and that’s the right thing to do. Crap I know. Chemo is awful, but it’s doable. Also it depends on what chemo you are having - I think most breast cancer ones are not easy, and involve IV drips rather than tablets, but until you know what the actual drugs are then you won’t know the side effects and impact on your life. Most women I’ve met on “Pax” seem to keep most of their hair (cold cap) & some can continue working. Most on EC or TCHP put work aside for a few months and loose their hair. It’s shit, I’m so sorry, but it’s all doable.

I’ve looked back over the last four months and gosh my life has changed. I cold capped and I do have hair, but it’s thin and grey. My skin is grey and my leg hurts from PN. But I’m still bloody here. I wrote a list of all the positive things that have happened since starting - UK holidays, dinners with friends, the love and support from family, etc - there have been some awful times (my mental health is shot) but I will get there. One foot in front of the other, one day at a time.

@BatshitCrazyWoman you seem sorted but I’ve just spotted a suzzipad kit on Vinted for around £20.

Chemo #5 today. Let’s go!

If I were taking public transport I’d definitely put this in a wheelie case!

@Littlecaf life gets better when you finish chemo because you recover from the treatment then keep going! rather than going in for the next lot!
It's been a slow road to recovery for me but I notice improvements over time, fewer naps, being able to stay up past 9pm 🎉

@breastcancerpanic I agree that chemo is a bit grim but doable. It wasn’t as bad as I expected - I was terrified before my first dose, I need not have been. I nearly gave up after the first dose but am really glad that I didn’t - I was triple negative so it was the only treatment available.
Having some support both mentally and physically helps a lot - a friend who’d been through it all gave me enormous encouragement and support.

Thanks Littlecaf Hope you start to feel better soon.

breastcancer Re second NHS opinion I never used it but people who do often it's from somewhere like the Marsden if by London, often somewhere seen as leading for treatment. I think maybe ask your team if they can refer or go via GP. My concern would be the delay this might cause as it is better to start relatively soon. Other option would be to go private, probably £300 or so for an hour's chat, though check prices with them, sometimes that also needs a go referral or sometimes can go direct. Though ask your oncologist to go through why and for any data to support that if a data person. Ours use Predict Breast which is available online. Prepare a list of questions in advance.

Re shielding not exactly but you are high infection risk and so there's a 24/7 line you can call immediately if your temp goes over 38C. Best to get a digital thermometer and I was told to take twice a day or if feeling ill. If you do get ill they can sometimes admit people so I preferred to be very careful not to get ill and didn't but it's left up to the patient. I was also end March on so doing things outside was easier and I stuck to outside only and also used to take handgel everywhere but I am a very cautious person re germs. They told me with COVID there's a one third chance of being admitted to hospital and those stays can be pretty grim. It's also a balance with mental health so if getting depressed better to go out. Depends on other people as well re meeting others, some people are careful, some are not.

Tiredness, personally I did not work during Pax or exercise, my oncologist was not keen on me doing anything other than rest and swimming was banned though walks were OK but varies what advice is. Generally they don't like you working in public facing roles or high infection risk but other than that up to you. I would maybe get signed off initially then see how you feel. Can be worth doing ESA if needed as well.

I did find exercise hugely beneficial after treatment ended gradually building up, swimming for me was easiest and most benefit but go with what you enjoy.

Ooh thank you!

@breastcancerpanic I'm in the thick of chemo currently (surgery and radiotherapy to follow). I had four cycles of dose dense (every two weeks) EC first, and found that tough. I slept a lot, and felt like I had flu. Had a couple of days where I got up, and then went straight back to bed. I'm now on weekly paclitaxel and have my third treatment tomorrow. I don't feel anywhere near as bad, but the tiredness is cumulative so I have to sleep/rest in the afternoon. I'd struggle to go out in the evening to be honest.

One of the things that's really affected me is total lack of appetite, so I've lost a lot of weight (and I didn't have any to spare!!), and am inevitably losing muscle. I do go out for walks, though. And things tasting foul has meant there's lots of things I'm not currently attempting to eat. Plus the incredibly dry and sore mouth that makes it painful to eat. Yeah, that's all a bit of a shit show 😔

I'm avoiding crowded places, so wouldn't go clubbing (not that I do!)/the cinema/the theatre. But I do go out (early) for breakfast sometimes, and attempt to eat 😬

Because I'm now thin and drawn, and have lost hair I look a mess, frankly 😔

But ... an MRI showed that the chemo is working, so all of that ⬆️ is a small price to pay.

@BatshitCrazyWoman glad the paclitaxel is easier and that you are getting out a little bit so sorry about the rubbish time you’re having. I had pax #5 yesterday so the next treatment takes me halfway through pax which feels like such a milestone.

The lady in the bay next to me was having her first session yesterday, cold capped and had her ec. It was interesting to talk to her and to see her being given her injection kit and other drugs. I guess my experience of giving ds2 his insulin for a while until he became independent will help. I think we are all gentle on newbies but want to try to share something to help, knowing how hard it can be at times. I do hope she goes on ok.

I’ve had my weekly hairwash today, favourite thing of the week!

Does anyone know what the hairwash/ haircare routine is after cold capping and how soon we can wash it a little more regularly?

Thank you so much - this has all been massively helpful to me. I am trying to understand what life will be like while having chemo, and I'm so heartened to read lists of things people could enjoy at some point in the process, and it is also so useful to know what sorts of things are not possible. It is so daunting to be setting off into the unknown.
I think that from reading the thread and having a think I've come to understand some things. One is that I think I do get where the oncologists are coming from, because I think that the grades describe how differentiated the cells are, and this correlates with aggressiveness, but the correlation is not perfect, and I think they think that my cancer is behaving aggressively - so putting 'grade 1' into predict breast may not be giving them the best guide. There is nowhere for example in predict breast to put in that it is multi-focal. So I think I do see their logic maybe.
Another is that (and I think someone literally said this upthread! I seem to have just adopted it as it is such a good point) it's not so much a second opinion that I want, as a prolonged conversation with an expert. Hopefully I will get this with the oncologist on Tuesday. If not, I'll at least know what I am looking for in seeking help from elsewhere.
I am honestly so so grateful for your help - this thread is amazing.

@breastcancerpanic It may be possible for you to email the oncologist, I ended up doing this a couple of times via his secretary, having had two private appointments. It meant I could organise my questions and he could see my concerns. We then had a NHS phone appointment which cleared up concerns and misapprehensions.

Its’s difficult for clinicians, at times, to understand what is day in day out for them is once in a lifetime, life altering stuff for us. I think it’s also tricky for them as every patient has their own way of dealing with it, some want to know and try to understand; some want to cede all autonomy and not ask too much.

Just dropping in to join if I can?
diagnosed with Multi focal HER2 invasive breast cancer in August , single mastectomy in September , nodes clear but breast was full of high grade DCIS and five HER2 invasives
I’m about to head to hospital for my first chemo and herceptin and on a score of 1-terrified . I’m a billion !

Waving to @Rockschooldropout glad you’ve found more of us here, it’s very supportive. Good luck today.

I had my follow up with the surgeon after the lumpectomy and it's good news - thankfully. The margins were clear and there was nothing in the lymph nodes so surgically I'm done. He drained 200ml fluid from the area so now it's sore as hell, told me (in the nicest possible way) that I didn't look especially well and need to rest more and to take more pain relief!

If the BRCA test comes back positive then he'll seem me again to discuss possible double mastectomy, otherwise it's 6 months until the next appointment.

I'm now waiting on an appointment with the oncologist to discuss chemotherapy, radiotherapy and bisphosphonate treatment. That should be within the next 10 days so until then I'm taking this as a win.

@Rockschooldropout, I'm sorry you're here but there are a lot of lovely people with lots of sensible and useful advice.

Well done @frostyfingers, keeping everything crossed for the test and hope you can get some rest in before the oncology planning.

Hi all, sorry to hear of your issues with treatment plan @breastcancerpanic. Sounds like the veterans here have some great advice. I echo those who say vent away, it's hard enough dealing with the diagnosis and these curveballs throw even more at us to deal with.

And welcome @Rockschooldropout! I'm also a newbie here though tnbc. I have had a wonderful reception and some beyond supportive people on here.

From my end I'm starting treatment Tuesday and utterly terrified myself. I'm going for weekly pax/carbo and 3 weekly pembrolizumab. I'm hoping the first one will feel like an achievement. I'm still awaiting my biopsy for my other breast, but they have said that no matter the result treatment plan remains. I'm not sure I quite get it. But we will see. Then I'll move onto EC with pembro after and then surgery tbc.

I hugely appreciate people giving their chemo experiences on here which somewhat help my anxiety! I have a particular worry that my interstitial cystitis will flare up or I will get a uti.

Any first chemo tips appreciated! Have decided against cold capping...I've got the gloves and boots so I'll let you all know how I get on with them.

@frostyfingers that's good news, really happy for you x

Oh and @BatshitCrazyWoman thank you for sharing your chemo experience so far. Are you doing pembro alongside? Sounds like our regime is very similar but I start with the pax/carbo and then move on to the more difficult EC. But hearing that you got through it gives me strength. All the best with upcoming treatments. I'm in the same boat with weight loss and I haven't even started treatment! I can't really afford to lose weight, I don't think a diep will be possible for me but I'm happy to delay and go flat to be honest. Hope they have given you something they can help your mouth pain. Most importantly, so happy to hear of your MRI result! That is encouraging. Can I ask at what point you had that, was it after the EC? Just wondering how often scans will be done to monitor how things are going

Hi @dancingwhilstfacingthemusic @frostyfingers and @Mintymood I was due to start 12 weekly paclitaxel but I’m allergic to it so I’m having albumen bound paclitaxel every three weeks .
@Mintymood if it helps . I was a mess when I got here at 1 , crying like a baby ..the nurses were lovely and I’m now five mins from the end and wonder why I was so anxious 🙈

Yay well done @Rockschooldropout you smashed it!! 🎉🥳🎉🥳. Hope you have a relaxed evening and a decent sleep. First one done!!

@dancingwhilstfacingthemusic I’m glad to get one ticked off x
Had a small reaction to the herceptin but was dealt with swiftly and I went onto my chemo with no issues

I came home from chemo today with 6 new lots of medication for mouth, lips and skin 😂

I'm currently having 12 weekly cycles of paclitaxel, with a Phesgo injection every three weeks. The Phesgo continues three-weekly until next November, and is for HER2+ breast cancer.

I had that MRI just before my fourth and last EC.

I was talking today to someone about what I want to do post active treatment to build myself up again. I feel like cancer has stripped away every little bit of me, and most of the joy in my life, and fuck me, I want to invest time into getting me back. This person seemed to think that once (hopefully) I get my 'no evidence of disease' I'll be fine and can just pick up where I left off. No. No I won't. They also said radiotherapy doesn't have any side effects. So perhaps they are just an actual idiot .... made me cross, but I'm doing all my stuff for myself anyway once I've reached the end of active treatment.