Likely breast cancer after ultrasound - thread 4

[spartanrunnergirl]

Hi all!

Thought I’d start thread 4. I’ll put links to the previous threads below.

Welcome.

The original thread was started after I had a mammogram recall and was told at the ultrasound that it was likely I had breast cancer - before biopsies were taken, and before I was ready to hear that (if you are ever ready to hear that).

Three full threads later we are still sharing support, experiences, and advice. We’ve celebrated breast cancer wins and thrown virtual hugs around those who’ve needed it. (We’ve all needed it 💗)

This is a hugely kind and caring bit of Mumsnet - where we’ve all felt that awful fear waiting for scans, tests, results, or with an early and uncertain breast cancer diagnosis.

You are not alone.

This is the awful club - full of awesome women💗

@Firework73 I think partly because it prolongs the process each time, also I read it doesn’t always work and most of all, I don’t think I am bothered enough about the hair loss. It is a very personal decision for each person, of course and when it comes to it, I may care very much indeed. I think you should do what feels right for you.

I didn’t cold cap. Like @rhubarblover I didn’t want to sit in the chemo chair any longer than necessary. I have very thin hair that was cut really short to disguise that fact. I was really upset about losing it but didn’t feel it was worth saving. I also was curious about how it might grow back. I went to the wig appointment but it upset me a great deal. Wigs are thick, so while I thought that might be nice to have “better” hair, even I looked at myself in the mirror I felt wrong. It is indeed a very personal thing. I wear buff tubular scarves and tuck them in at the back. Or beanie hat things. I bought bandanas too, they are cooler in the heat. Eyebrows and eyelashes have thinned but clinging on going into last cycle, I expect they’ll go then…

Question for those of you further down the line from treatment. Can you recommend travel insurance? Particularly if you have another condition (autoimmune in my case). Hoping to get a holiday when I get past radiotherapy!

I would recommend Avanti travel insurance
https://www.avantitravelinsurance.co.uk/
My DD used them yesterday because she has several health conditions and is waiting for a referral for possible POTS and is travelling to Africa for a holiday. The Avanti customer service lady was wonderfully helpful and clearly spoken. DD had called Insurancewith first and they were hard work. So many more questions and then she said she had to speak to their underwriters because DD has unintentionally lost weight recently due to depression. She can’t wait up to 48 hours because she’s travelling tomorrow.
i also used Avanti for a trip to Southern Ireland last year with the cost £48 for DH and I. DH used All Clear for a trip to Germany and it was £109 just for him with a shorter duration. We’ve both been treated for cancer.
If you have no luck with Avanti you could try https://www.biba.org.uk/find-insurance/broker-directory/our-travel-insurance/

@Aprilcherry04 ask your doctor for a prescription for omeprazole - I took it pretty much throughout chemo as otherwise I had awful heartburn.

Thanks so much for taking the time to recommend these.

I have 2 more chemos to go and to be honest feeling very rough now, I have it weekly so no recovery time, just digging deep now. Apart from nausea Ive had every side effect possible.

@Firework73 @rhubarblover @cancerycaramelbear
I 've found the hair loss one of the most difficult things to deal with. I do not suit the skin head look.
I didnt cold cap because it didnt look that effective with my treatment, I didn't want to spend the extra time in the chair, plus it isn't available at my nearest centre so I would have had to add extra travel time. It didnt seem worth it to me.
I do have an excellent wig but find it gets quite hot so I keep it for special occasions. Mostly I wear beanies.
I haven't completely lost my eyebrows or lashes but they are very thin.
On the plus side I haven't had to pluck chin hairs for quite some time.
I came across an article by Victoria Derbyshire yesterday about hair loss. I didnt know she had breast cancer. I'll try and link to it

https://www.bbc.co.uk/sounds/play/p0npx885

@Firework73 Cold capping is a very personal choice, There are pros and cons and no right or wrong answer.

Personally, I chose to cold cap throughout my chemo (4xEC and 12x Paclitaxel).
It was tough but worth it for me. Keeping my hair was very important (again this will differ from person to person) so I was adamant to try anything that would help me not lose my hair.

The first 10 minutes are brutal - it’s very uncomfortable but if you can push through that first bit then it just goes numb and is manageable. Taking 2 paracetamol about an hour before did help a bit.

Cold capping also adds extra time to your treatment. It has to be on for half an hour before the infusion starts and an hour afterwards.

It also doesn’t work for everyone, but research suggests that even if you lose hair whilst cold capping, it can help it grow back quicker and stronger.

I would say I kept about 70% of my hair. If you didn’t know me you would never have noticed or known I was having chemo.

Whatever you decide is your decision. You can try it and see how you get on. If it’s not for you then you can change your mind at any time.

Good luck 😊

Thank you all for your messages. Like you @PoptartPoptart I want to avoid losing my hair so feel the same way . Like you say it’s a personal choice . This is all so rubbish isn’t it

I cold capped, but lost my hair anyway. Literally the worst of both worlds! I had dose dense chemo, but had lost all my hair by the time I'd had my four ECs. It started growing back when I was having Paclitaxel. I'm 17 months post chemo now, and have had a couple of haircuts/colour to get it into a decent shape so I can begin to grow it. It's wavy now.

Not going to lie, it was incredibly distressing, and although my hairdresser tells me it's growing super fast, it's not bloody fast enough for me!

hi everyone, I’m just back from another appt to try and break down the cording in my right arm, but it’s very stubborn. Has anyone had any success in getting rid of it? I’ve tried all manner of additional YouTube exercises but it’s traveled down by right arm.

and on a side note, I’m getting mixed messages about when I might have radiotherapy, I’ve got more surgery booked next Friday to remove the margins which weren’t clear, and my consultant thinks that, as we’ve booked to go away 8-18 Aug, then time wise it would be better to have radiotherapy after my hol, but the nurse said 8-10 weeks after surgery (presume surgery 1 on 8 May) is the recommended timescale. I want the best chance of it working, but if I’m going to feel grim all holiday then I’m not sure what’s best to do?

I hope everyone’s doing ok (or as well as can be expected), I’ve been pretty stoical through this but had a proper so feat at the dentist yesterday about delayed treatment- the straw that broke the camels back!

@dibly I guess all you can do really is let the experts guide you timescale wise.

Just from my own personal experience, the actual radiotherapy was ok. I felt a bit more tired than usual during treatment, but nothing terrible and it was much easier than chemo.
However, about two weeks after radio finished I developed late side effects (this can happen apparently) and my skin was red raw and blistering and so so painful. This was despite religiously applying moisturiser every day and keeping the area clean. I thought I’d got away with it but nope!
So all I would say is don’t rush through radiotherapy and go on holiday straight afterwards, just in case you are unlucky like me and develop late skin effects.
It’s been three weeks now and my skin is slowly on the mend. I’m using prescribed gel and dressings from the hospital and under no circumstances am I allowed to go swimming (chlorinated water) or go in the sun.
Just something to bear in mind x

Thanks @PoptartPoptart sounds painful, thats definitely something to consider. Will be guided by oncologist, but have only seen surgeon and breast care nurses so far.

Oh that doesn’t sound good. I reckon I’ll only have August to go away before school term starts. We desperately need to visit family abroad…

@PoptartPoptart How much radiotherapy did you get? I am due to start radiotherapy within the next 4-6 weeks, still waiting for an appointment with the oncologist.
I am hoping for a very short course as they got clear margins on the tumour and the lymph nodes were clear.

@MidLifeWoman I had 10 sessions, given over two weeks (Mon - Fri)

Like I say, I was absolutely fine during and immediately after. I was lured into a false sense of security and thought I’d been lucky and got away with it. It was two weeks after I’d finished when the radiation burns appeared And that was with me moisturising three times a day religiously.
Luck of the draw maybe 🤷‍♀️

@MidLifeWoman meant to say, I also had clear margins and no lymph node involvement. I’d had 16 rounds of chemo, topped off with 10 radiotherapy fractions.

My radiotherapy nurse suggested tucking a clean cotton hankie between the bra and me. I actually used silk ) and it worked brilliantly. Everything is so much more comfortable.

@Aprilcherry04 I really recommend asking your oncologist or GP to prescribe some Lansoprazole for heartburn and indigestion.
In my experience it tends to get worse with each chemo. I was swigging Gaviscon like there was no tomorrow but as soon as I was prescribed the Lansoprazole it got a lot better. I still used Gaviscon, but not as much.
Hope you feel better, you have my sympathies

By the way, in case this helps anyone..
You can get free prescriptions for 5 years with a cancer diagnosis. This applies to any prescription, not just medications relating to cancer. I got mine when I was newly diagnosed and it’s saved me a small fortune so far. Details below from Google…

In England, cancer patients undergoing treatment for cancer, the effects of cancer, or the effects of cancer treatment are eligible for free NHS prescriptions. To claim this, you must apply for a Medical Exemption Certificate.

What it covers: It exempts you from all NHS prescription charges, not just those related to cancer.
Validity: The certificate lasts for 5 years and can be renewed if you are still receiving treatment.

How to Apply
Get the Form: Obtain an application form (called an FP92A) from your GP, hospital doctor, or cancer clinic.
Get it Signed: Your GP or cancer specialist will need to countersign the form to confirm your eligibility.
Submit it: Send the completed form to the NHS Business Services Authority (NHSBSA). You can also ask your GP surgery or oncology team if they will submit it digitally on your behalf.
Waiting Period: Your certificate will be posted to you within roughly 10 working days of the NHSBSA receiving your application.

Thanks you. I'm already on esomeprozale so they told me to double up which has helped a lot. New annoying side effect - diarrhoea!!

Hello everyone. I’ve lurked on this thread, and previous ones, for a while from my breast clinic referral at the end of April. Sadly it was cancer, Grade 3 invasive ductal carcinoma ER PR positive and HER2 negative. 1-3 lymph nodes affected but clear CT. I had a single mastectomy and full lymph node clearance on 4th June and am now home recovering. I’ve empathised with many of you on here, the fear, the feeling of observing your own life from afar. Still in a state of disbelief. I’m 42, have 2 amazing children aged 8 and 2, a busy and fulfilling career and home life. Absolutely not used to not being in control! I’m not ready to attend any in person support groups but sharing virtually feels a safe space 🫶🏻

Has anyone who has been there got any tips to cope with the wiped out tired feeling that comes from chemotheraphy? I have two more rounds to go, next on Weds and hopefully the final one prior to surgery on the 1st July. (Admittidly having grade1 Diahoreah for the past 2 rounds has not helped) Having to stop and lie on my bed for an hour each day just to keep going.

I hope those undergoing treatment are doing okay, you’re all in my thoughts.

I think I will be getting my results Monday-Wednesday, I’m emotionally exhausted but hoping for positive results.