Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Anyone want to share in some positive news?
Had a scan today and my ovaries have responded well to the fertility treatment and on Monday I am ready for harvesting!!
There are still so many stages that could go wrong, but for the first time in a while my body is actually doing what I'd like it to.
It also gives me a good week and a half between this treatment before starting chemo and radiotherapy - a little rest, more time for the rig to settle
Oooh talking if which, guess who managed to bend over enough to put her own socks on today! Me!!!
I sincerely hope you all have some kind of small win in this giant pile of poo

@ForestFlowerFairy congrats on your well behaved ovaries!! I’m really chuffed for you, let the harvesting commence! good news on the socks too, we should take any win as a win at the moment 😃. Come back and update on how your chemo goes, by the sounds of it I will be starting right behind you.

My good news (well it’s not good but it’s something) is I’m seeing my Oncologist on Monday 15th. My last tests are on Thursday 11th (mammogram, ultrasound on nodes I think and marker insertion) so I’m hoping that I’ll get the full picture and the plan of action at this appointment on the 15th. I’m looking forward to getting cracking with treatment but at the same time absolutely dreading the results.
I keep getting stabbing pains in the offending boob so I think it knows I’m preparing to kill it and it’s rebelling. I’m intrigued to know if the entire thing (all 10cm of it) is actually tumour or if it’s part tumour, part milk blockage. They did 2 ultrasounds on the same day, 1 of which was with a consultant radiologist and neither of them suspected it was a tumour. That’s what’s really blown my mind.

Ive been reading about cold capping and can’t decide if I can be bothered with it. I have a LOT of hair and it’s very thick. It’s curly and mid way down my back and I do like my hair, but I’ve read it adds extra time to chemo appointments yet doesn’t have a massive success rate. So I’m weighing up whether to cold cap or invest in some nice head scarves and a wig for if I have to leave my nest.

I've heard mixed things about the cold cap, I was told the type of chemo I'm having I'm unlikely to lose my hair but it may thin a little so it's one of the few things I don't need to make a decision on.
I've no idea if it helps but my entire decision making process has consisted of: this may not work, but if I don't try it'll definitely not work.
Will I wonder what if or regret?

My feeding tube was 'optional'
They say just 10% of people who have radiotherapy on the neck don't end up using it.
If I didn't have it fitted and I do lose the ability to swallow - id need a different type of feeding tube which would mean hospitalisation.
Neither of those options or odds seemed like something I wanted to risk so I went ahead.

Can you use the cold cap for a session and see how you get on? Are there any other considerations?

I start on the 17th, will report back and hope you're super close behind me x

@cannaecookrisotto thanks for the welcome. I've just read your posts.

I'm a bit older than you, 47 and also have two girls age 9 and 12.

My consultant told me he was sure it was fatty tissue. So I went alone to the appointment and the first words (after asking if I was alone) were 'sorry it's cancer'. I also was wondering about chance they got it wrong!

I was also swollen after biopsy and convinced they spread it!

I'll have more news tues. Headaches are worrying me so im convinced it's in my brain or something. So right now I think I'll be happy to just be told I need my boob's off. Hope that's not insensitive. Its probably hormones from suddenly stopping pill. I want to see my head scan though to put it out of my mind.

I'm already bruised all over arms as they couldn't get cannula in. I'll be asking for a port if I need chemo.

Great news @ForestFlowerFairy

@cannaecookrisotto I had 16 rounds of chemo for bc and cold capped for each one. I was lucky and kept most of my hair. I also used cold mitts and socks as I began to get painful neuropathy in my fingers.

Give it a go and see how you manage.

Thanks @cannaecookrisotto I wouldn’t choose to be a cancer expert but at least it is helpful to some people!
Re the port option versus a PICC line or IV cannulas:
IV is initially fine, leaves nothing behind after treatment but knackers up your veins and eventually they can’t find a vein.
PICC is a line in your upper arm ( ten minute fitting and not painful) that stays in for the whole of chemotherapy and needs weekly flushing. I was allergic to the nickel prong, and two of the dressing types which was tedious. You have to cover it to shower and no swimming or gym with it in. Eventually while I was having treatment for a dislocated ankle the orthopaedic team yanked it out by mistake. Back to IV for the final lap.
Portocath takes half an hour in theatre to fit in your upper chest but once the stitches heal it’s under the skin, no dressings, only needs flushing once a month so with each chemo. You can swim, gym and row etc and it resists infection because the skin is intact. It comes out once treatment is over. Mine was removed during my lumpectomy.
The problem with PICC and ports is that only trained nurses can access them so there is a lot of faff while they hunt down a trained person. They won’t use them for CT contrast only for bloods and chemo. They need special needles to plug in which sometimes they can’t find. Overall though I would say the port was my favourite option.
Hope that helps.
Top

@cannaecookrisotto I had a portacath fitted and am very glad I did. Once it healed, it caused me no bother at all. Because I had my chemo at a private hospital, all the oncology nurses were trained to use them. It made chemo, blood tests and indeed blood transfusions much easier. Takes about 30 mins to put in, in an operating theatre under sedation rather than anaesthetic. The sedation drugs were very much my favourite drugs i had throughout this whole thing 😆

@ForestFlowerFairy, I like your way of thinking, if I don’t try then it definitely won’t work so I might give it a go, see how I get on. If I find it horrible then I can always stop, but if I don’t try it out then I’ll never know! Hoping to be right behind, have appt with onc on 15th, spoke to BCN today to ask if all my results will be with oncologist by then so I’ll be getting the dreaded results and she was optimistic they will be. Hoping they’ll let me get cracking this week.

@FcukBreastCancerim so sorry you heard that news on your own. It’s like floating out of your body for a hot minute isn’t it and your brain explodes and implodes all at the same time. Then the thought of your kids hits you like a brick wall and that’s when my tears came. I’m sorry, will somebody be going with you for results and such in future?
I know what you mean about thinking it’s spread, I keep getting a pain in the middle of my back and my first thought is it’s in my bones. I have a 5 month old so the logical part of me thinks it’s more likely from the constant lifting her up and carrying her round like a chubby bowling ball. Sending you hugs for Tuesday for sure.

@dancingwhilstfacingthemusic, it’s nice to hear a real story of cold capping working! Everything I’ve read on the dreaded internet says it’s not worth it but you’ve defo give me food for thought.

@TopOfTheCliff, I think I like the sound of a port the best, I’ll be having chemo in the private bit of the Christie’s, so I’ll double check with the Oncologist if I’ll have any issues like you’ve mentioned.

I’m learning a lot of things that I never thought I’d have to bloody know but I’m getting to a stage now where I’m getting some relief from being armed with information. I’ve tentatively approached some “safe” websites about TNBC. Slowly bringing my head out of the sand.

@Poledra I too enjoy the occasional sedation so think that’s just sold it to me for definite 😂

@TopOfTheCliff I have a PORT fitted - I agree with what you say - for me it is by far the best option - it needs to be 'flushed' every six weeks but it's a lot easier to manage and live with - especially when having your bloods taken and receiving ones Cemo.

@cannaecookrisotto Yep - if you're offered the PORT option - take it.

Would asking for a port delay chemo at all? Or would they crack on with the chemo then do the port when they can?

@cannaecookrisotto if you are a private patient you will probably find everything goes smoothly and they fit the port before you start treatment. To be honest, even on the NHS I walked from the theatre day case recovery unit with my new port straight up to the chemo unit and sat in the chair less than an hour after it was fitted.
The treatment of TNBC, like almost all cancers, has been revolutionised by immunotherapy. Two months after I was diagnosed they added a monoclonal antibody treatment to the standard regime. I missed out on this but I just think at least I have it in reserve if I get a recurrence. I had dose dense AC and paclitaxel for mine IIRC followed by six months of Capecitabine “ just to be on the safe side”. I am so far on the safe side I have probably fallen off it. But I had a good response and am three years clear now.
The statistics are improving all the time for survival so the stuff you will read is already out of date. Don’t frighten yourself!

@cannaecookrisotto ignore the dreaded Internet! You’ll meet people on mn who have had varying cold cap experiences but it does protect the follicles even if you lose a lot of hair.

The best thing I did ahead of time was to have my eyebrows microbladed - Karen Betts clinic did mine. She was amazing. You do need time to heal before chemo though.
I had a Picc line and it was brilliant over the blood tests and chemo for 16 cycles. I don’t think my veins would have stood up to a cannula for many weeks.

@cannaecookrisotto Nope - shouldn't be any problem - looking at my diary I had the 'Portacath' inserted on a Thursday and had my next Chemo treatment on the Friday.

@TopOfTheCliff Agreed

I cold capped and kept pretty much all my hair. I had it cut very short at the beginning, was careful washing it using cool water only with very gentle shampoo and combed it with a wide tooth wooden comb. Before each session I took Nurofen & Paracetamol to ward off the initial discomfort. Yes it is unpleasant for the first 10/15 minutes and yes it added time but I found it worth it, the thought of losing my hair really upset me.

I wasn’t given the option of a Port unfortunately and after 2 intravenous infusions had to change to a PICC line, which was a bit of a nightmare tbh, I had blood clots and a collapsed vein so they couldn’t find a good place for it and I ended up with it on the inside of my elbow which was really annoying, and I developed an allergy to the dressings as well. I wouldn’t recommend trying for intravenous infusions, I wish I had been discouraged from them as I had to go on blood thinners, have a big lump on my hand from the infusions and collapsed veins all down the inside of my lower arm which are very ugly.

So in conclusion, definitely try cold capping and if you’re offered a port then say yes!

Thanks All, so cold cap and port are now on my list of “yes please”.

@frostyfingers sorry to hear you had such a crap time with collapsed veins, why weren’t you offered a port? Is that a private vs NHS thing? If so that’s bloody shit and gives me rage. Ports for all should be the norm surely if that’s what they choose.

Did anyone have side effects on your nails? Is there anything I can do to try and protect them? I’m not fussed on what they look like, it’s more the thought of them falling off making me squeamish. The thought of losing my hair does upset me but I think it’s more so because I’m worried about my 8 year olds reaction to it. I’ve spoken to her school and they’ve said to let them know when it’s go time and she will have weekly sessions with the pastoral lead. She knows that I’ve got a lump and that I’ve been having tests so I’m hoping to ease her in with “mummy’s lump needs some super strong medicine to get rid and it’s going to make me poorly but I’ll buy you a nurse playset and you can help look after me” type deal. Then if she asks questions I will answer honestly in an age appropriate way. Shes quite open with me and tends to let me know when she’s feeling insecure or upset about something (there’s been a lot of that since DD2 was born), so I’m hoping she comes to me with questions rather than bottle it up and be imagining all sorts. It’s a fecking mind field isn’t it.

@TopOfTheCliff, I can’t fault the NHS so far, I know everyone’s experience is different and it can be a postcode lottery (I’m in Stockport, not diagnosed at Stepping Hill but at Tameside General) and from the minute they diagnosed me it was like all systems go on their end. The day after being told, I’d had phone calls in the morning booking me in for everything, then when they could get me in sooner they’d call and get me in.

v. Interesting re immunotherapy, I’ve just added to my brain dump to ask the Oncologist on 15th.

The Oncologist they assigned is Dr Hannah Chapman, I’ve looked her up and her pedigree looks pretty good (not that I know what I’m looking for but she looks clever and went to Cambridge and other fancy sounding specialisms) so I’ve told AXA I want to stick with her. I’d be treated under the Christie too regardless of private or NHS. Apparently there’s a private side of the Christie where you have treatment but I’m going to have a look round when I go on Monday. I feel a bit weird about having private healthcare, I’m not someone who even likes the finer things in life or feels the NHS isn’t good enough for me. The only reason I have the healthcare plan is because I have my own Limited company and because of the nature of my work, have barely any expenses which irritates my accountant. So I got corporate private healthcare for me and the kids to give him something to shut him up 😂. Never in a million years did I think I would be utilising it.

I feel really sorry for my mum. She was with me when I was diagnosed and it must have been horrific. For me, the only thing worse than being told I have cancer would be to be told one of my kids has cancer so I can’t imagine what she’s feeling. She’s found a support group much like this one with other mums and is finding comfort through that. She’s gone into full on mother mode and is determined to fatten me up a bit for treatment (I’ve lost 10kg). She’s cut her hours at work and is here with food and nutrition shakes and watches me eat/drink them with beady eyes. She’s also very realistic about everything and has a knack for getting me to talk honestly about my feelings which I appreciate. It’s been quite overwhelming how my family have just come together as a unit to wrap me up in a blanket of support, put in rotas to help with the kids so DH can concentrate on looking after me, batch cooking for us, checking in etc. I’m really lucky in this regard. I’ve given AXA and GP/hospital permission to deal with my mum too so she’s taken on a lot of the mental administrative stuff that she knows I’m getting battered with so she’s tracking my itinerary too. Then the knock on effect of support, like all her colleagues stepped forward to cover mums hours no questions asked so she can be there for me. I feel really lucky and appreciate not everyone has this.

I’m also finding it strange because I’m normally the “fixer” of the family. The one who deals with the crisis and is the voice of reason, whereas now I’m on the fixing end.

Christ this was an almighty brain dump and this post will probably send everyone reading to sleep by the end of it!!!! Bloody cathartic writing it all down though.

I also had a port, and enjoyed the sedation (Fentanyl, I think) 😂

I also cold capped through 16 lots of chemo, but still lost my hair (with the chemo drug I was on, there was a 50 50 chance that that would happen). I kept going with the cold cap and my hair started growing back really quickly.

I'm adding my experience because there does seem to be an assumption that cold capping will guarantee you won't lose your hair.

I've now had an Intralace hair system from Lucinda Ellery, which I'm delighted with.

@cannaecookrisotto Did anyone have side effects on your nails? - Yep, they stopped growing and there were a couple of lines across them - I didn't care - there was no indication that they might fall off and no one told me they might.

Also, my hair didn't fall out (different Chemo drugs) but it grew very slowly and I only needed to shave about once per week - I didn't care and rather preferred it that way actually..

Some readers may not know - a 'Port' is a 'Portacath' - a small chamber that sits under your skin. It's attached to a long plastic tube that goes into a large vein close to your heart - there are some non squeamish drawings on-line.

... Bloody cathartic writing it all down though. - yep🙂

Oh – something new – I present:- The Chemotherapy One-upmanship Table

I have Chemo Pump fitted – it’s a continuous pressure pump that gives a low dose of chemotherapy 24 hours a day – it’s fitted after my Chemo session at the Hospital - it contains a small balloon, (looks like a condom) which contains the chemo drug - it connects to your delivery line (my port) by a plastic tube – in my case it’s removed after 48 hours – I’ll be popping alone to the District Nurse soon.

Chemotherapy one-upmanship table – one point to me.

Glad to hear my nails aren’t about to drop off, don’t know where I got that nugget from. That’ll teach me for random internet searches 😂.

Just awaiting MRI now for the bilateral whatsit with the dye. I had dye on the CT on Thurs and it made me feel like I’d peed and all warm which wasn’t entirely unpleasant. When the nurse removed the cannula though and did like a slow wax on my inner elbow peeling out my hairs slower than a slug, I was shouting to buggery. God help me when I have something actually painful!!

@DanFmDorking interesting re your chemo condom delivery balloon, is that due to the type of chemo you’re having?

@cannaecookrisotto ... is that due to the type of chemo you’re having?
er, I don't know, it must be I suppose - it has two large labels with large print - 'IF PATIENT UNWELL: DISCONNECT IMMEDIATELY' and CYTOTOXIC AGENT HANDLE WITH CARE' - makes me feel special 😜

Oh - it contains Fluorouracil - look it up yerself

@cannaecookrisotto my fingernails were absolutely fine throughout chemo (I did use the hideously expensive Polybalm on them, don't know if that made a difference) but now, 7 months post chemo, they've suddenly got really flaky. I had a sort of horizontal ridge on each nail, which I think was the chemo damage, and this flakiness is that bit reaching the free edge of the nail. Or something.

I did however lose two toenails 😬 Again, happened after chemo was done. They're growing back.

@DanFmDorking I’m on an internet ban because I did a bit of tentative googling yesterday and read something that scared the pants off me about TNBC outcomes compared to some of the other breast cancers 😬. That AI shite that spams you right at the top of Google really doesn’t help either.

I keep thinking I’m getting pains in my armpit today, I just can’t help but think it’s been there for god knows how long and it’s now everywhere. My breast is so sore too, it’s throbbing.

Next scans are on Thursday 11th next week, BCN mentioned that I’d get the results of these scans on the day. I think they’re doing mammogram, ultrasound on lymph nodes and markers. What results will I get? Size? If it’s in lymph nodes? If it’s not in lymph nodes is that an indication that it’s less likely to have metastasised? Sorry if these are daft questions but it’s the safest place I feel to ask them

@cannaecookrisotto I have a great deal of sympathy for you but I'm going to be honest and a bit cold - I have no medical skills whatsoever and not qualified to answer any medical questions. I just speak from my own experience of colon cancer.

Your questions are not daft at all - in my experience the best people to ask would be a Macmillan nurse (specialist nurses that work in different areas of cancer care and treatment). Please contact one of them at your hospital or their help line.
I hope this helps - Dan