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💗

@dibly, my experience was the opposite. Absolute patriarch of a surgeon who told me what l wanted and did not or would not listen. Was an absolute mess by the time I saw the oncologist (chemo pre surgery thank God) they gently scooped me up, have fought my corner throughout, come up with solutions to help manage chemo side effects that knocked me for six and insisted l was seen by the lead breast cancer/plastics surgeon and NOT the first one. The lead has listened to the problems my drug and other allergies cause, listened to my reservations about surgery due to previous experiences and more importantly listened to my request for an aesthetic flat closure not reconstruction. I will say having a doctor/ surgeon who listens and makes time to explain their recommendations for your own case makes one heck of a difference.
Hope you can have an oncologist you feel able to work with as I know from experience that can make a huge and supportive difference.

@Imtiredthisyear I too panicked when I read ALL the POSSIBLE side effects from said drugs. This does not mean you will be hit by every single one although I have yet to meet any female who has not been hit by serious hair thinning and hair loss from the breast cancer chemo drugs. the chemo nurses are all highly trained on top of being registered nurses and they will look after you. ITs okay to let them know if your worried, stressed or over anxious as they will do what they can to support and encourage you.
Yes they will grill you over the side effects you experience but that is so they can ensure you have the right drugs to take home that will help you.
ITs also okay to take in your written down questions to your chemo booking visit. it is also okay to do so with your oncologist as most understand this is a scary new place none of us wanted to be.
At the start none of the chemo nurses, oncologist or BCNs thought I would be able to complete chemo. I had adverse reaction after adverse reaction and thought I had failed chemo till my oncologist explained they had a plan B, plan C and Plan D of different chemo drugs and that they thought in my case it was an allergy to the drugs carrier and they would ensure I was NOT given any chemo drugs using it ever again. they took on the hospital finance board and argued I needed a particular named drug not generic to avoid future life threatening adverse reactions from allergy. They then went out of their way to ensure reasonable adjustment so my DH could be with me on the chemo ward, that I was looked after by the most experienced chemo nurse that day and if ever a new chemo drug was used I was right next to the doctors station. the consideration, support and care given has helped.

The blood tests you have before are to ensure you are as fit as you can be before chemo. IF chemo starts to hit you those tests will pick it up. SOmetimes it delays chemo by a week to give your body a bit longer to recover, sometimes you may need some extra minerals or blood to make up for what chemo knocks out of you. That is never your fault and is increadibly common as most will end up with at least one delay during their chemo treatment for breast cancer. my delay has been down to the specific chemo drug I needed not arriving so the hospital called me to let me know about that and that I would be in as soon as they could source Ìt. the second was due to me being severely anaemic and needed blood transfusions when I thought it was plain chemo tired. The positive difference that made after was a good surprise.

That said I have a history of adverse drug reactions and allergies. IT is not uncommon for my body to meet a new drug and go hell no. On the chemo ward i have been treated on. (Very large regional unit) the huge majority of people having chemo have been absolutely fine, side effects are very well managed for those who do inform medical staff of issues they have had, nurses do bring in doctors, they do track down your oncologist and I have only ever seen one person have an adverse reaction during their first session and the nurses were on it and treating it in an They were able to walk out and had an appointment to see their oncologist to review their regime organised by the nurses.

I finished my 5 day course of radiotherapy today! The boob is very red and hot and I am dreading it getting even worse, having read the info sheet they gave me today…

I used ice packs and religiously slathered on 100% aloe vera gel and E45 lotion one after the other.

I think I read your advice before, @TheFormidableMrsC ! Have been taking ice packs and aloe vera to my appointments and will just keep going with that.
I read on a German advice site to use a cream with urea for moisturising, so I am doing that, too.
Did you get any reaction on your back at all, or just the boob?

No my back was fine. I do still, six years on, get the odd stab and flare from radiation. It is very well healed though.

Has anyone got a PICC line in? I've had mine in a month and although not painful, I find it a bit uncomfortable. The past week it felt a bit tender too. I was at the oncologist on weds and one of the team looked at it for me. She said it looked a bit inflamed but not infected. I thought my arm felt a bit swollen but they said it's not. It's actually stressing me out.

Go and have it looked at again @Aprilcherry04 . I don’t have a PICC line, but something felt funny after my surgery. I phoned the BCN and they had a look the same day. They said to always get in touch if anything is worrying me.

Hi all. I start radiotherapy next week, my letrozole came today. Also got my first bisphosphonate infusion next week. It feels like every time I start to feel better, something else happens to knock me down again! Very fed up about it all. Consultant said take the letrozole at night but I’m already struggling with night sweats and the women on the letrozole thread seem to often take it in the morning. I suppose I’ll try it and see. On the plus side, I think I feel some stubble on my head after the chemo hair loss. Not much, but definitely something there. Hoping to have at least a covering of hair for my holiday end of Aug. Hope everyone else is doing ok.

Thanks for the feedback and support at tee t my last oncology appt, I asked to speak to someone else and spoke to a lovely doc on Friday, and feel so much happier that she’s listening and taking concerns on board. Have opted to do radio first, get those side effects out of the way, then have bone density scan, and then discuss whether to try AIs, and if so which one. Also had radio mapping meeting on Friday afternoon. Didn’t get any cream though, but arming myself as much as possible.

How is your skin today @MidLifeWoman ? I’m keen to go on holiday fully armed with worst case scenario creams. And I’m moisturising non stop!

I did my 5 radiotherapy sessions last week. I had partial and not full breast radiation.
During the week the breast got redder and hotter every day. It is still like that today. Sometimes I get sharp shooting pains, but that could also be nerve recovery from the lumpectomy.
I am tired and need a lunchtime nap every day, but overall I am feeling surprisingly ok.

Forgot to say: I am still moisturising like a champion!

Can someone please reassure me about presurgery assessments. My brain has got stuck in trauma mode and Ihave spent the past two days crying about my presurgery assessments tomorrow. Yes I am doing trauma theraphy and had booked session with therapist to prep as best I can but the assessment was bought way forward by the surgeon so they can investigate what dressings etc they can use that I am less likely to pull a serious allergic reaction to.

got into a real state thinking back to previous life threatening surgeries esp two ghastly preterm c/secs and the absolutely terrifying one when l was five that tbh is the real source of it all that everything else has added onto. Best thing I could think to do was write down what happened to the best of my ability to hand to whoever is booking me in as I am not sure l can speak if they asked me about previous experiences of ops. DH will be with me and eldest DD has organised with her managers so she can leave her ward and come if l start to hit crisis and advocate over drugs and dressings issues that chemotheraphy seriously ramped up.
oncologist has recommended bloods not done for another two weeks to give realistic levels after chemo caused issues with Hb.

My pre surgery assessment (lumpectomy, no chemo) was fairly straightforward. Height, weight, ecg and blood pressure check. My blood pressure was absolutely through the roof because I was so nervous, but that was fine. Then the nurse went through a big questionnaire with me. Previous ops etc. That was it.
I think it is good that you will have somebody with you to advocate for you.
On the day of the surgery they bumped me up the list because I was so nervous, started crying and my blood pressure was sky high again. Maybe that is something you could suggest for your surgery, so that you don’t have time to sit around and panic.
Good luck xx