Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

My hair is growing fast now I am ten weeks on from my last chemotherapy dose. It’s dark and straight so far. I went hatless tonight when we took the DC out for a pizza.
Today I achieved something I’ve been wanting to do since August. I cleaned out my car! Despite hinting, begging and threatening I could not get DH to do it. I spent a happy two hours with the vacuum cleaner and lots of nice sprays and by the end it looked and smelled like new. Tomorrow I shall go to the car wash and pay for the most expensive programme where it even cleans the wheels. I’m living the dream!

Can I share a little bit of good news? The results of my genetic testing came in yesterday and I am negative for all of them. So no need for surgery on the healthy breast or a hysterectomy and I should get away with a fairly minimal lumpectomy. But more importantly my children don’t need to get tested and potentially have that hanging over them for their adult lives. I didn’t realise how much it was weighing on me until the doctor rang and it is so nice to have something positive to tell everyone who has been so worried about me.

i’m also anaemic and need a blood transfusion but meh, that’s fixable.

Congratulations @bringonyourwreckingball - May i ask what test you had ? Well done @TopOfTheCliff for precleaning the car - I love mine after a good valet.

@incognitodorrito i was tested for the BRCA1 and 2 gene mutations and one other which I think begins with Y but is quite recently identified as increasing breast and ovarian cancer risk. If I had been positive my consultant was advising double mastectomy and hysterectomy to reduce risk which was bad enough but the potential impact on my teenage daughters would have broken me. So the relief is immense.

@bringonyourwreckingball that's such good news and such a relief. I had my lumpectomy and sentinel node biopsy a couple of days ago but was told a few weeks before that there was no genetic component to my breast cancer. Like you, I was far more concerned about the future implications and consequences for my girls (who are 20 and 22) and it was such a relief to get that news.

@bringonyourwreckingball incredible news. I know how relieved you feel - my mum had breast cancer at 37 as well so I had genetic testing when I was diagnosed, I was so scared for my (then only 4 months old) little girl but mine was negative too ❤️

That's fantastic @bringonyourwreckingball - you're going to have such a good weekend!

Great news @bringonyourwreckingball so pleased for you.

I'm still waiting on my genetic test - fingers crossed I'll have a good result as you have. It is a worry isn't it?

First chemo done - feeling ok so far just a bit spacey (is that the steroids?).

@Top of the cliff how long did you wait for the antiviral when you had covid? I tested positive yesterday I had chemo on Tuesday😫

@Lisdeflores sorry you have Covid. I tested positive on Christmas Day. I entered the result on the gov.uk website and also phoned the chemo ward when my temperature went up to 39. One of those triggered a phone call from a consultant microbiologist on Boxing Day, then a pharmacist called, then the drugs arrived in a taxi around 11 am. I felt better after one dose of paxlovid although the metallic taste was vile. I hope you don’t feel too bad.

I'm okay thanks just a few high temps on Saturday.
I'm not finding it easy to get hold of the antiviral . I reported the positive test to track and trace and the acute ward at the hospital. Nothing from either I waited for the 24 hours that t&t say you should get a reply within. Nothing so I called 111 I spoke to a call handler who took details but then had to pass it to her supervisor. Her supervisor phoned back and agreed I was eligible for anti virials but needed to make another referral. Long story short I'm still waiting, I wouldn't mind so much but it is presented as a seamless procedure

Took three days for them to get hold of me for the antivirals last August, called the second day after I submitted tests but I missed the call and they didn't leave a return number. By the time I made contact with the hub (different to my care hospital), I was more or less over the worst of it and didn't want to travel an hour each way (I had to have the IV approach due to my current drug) five times. So I declined though the (probably junior) doctors tried to convince me otherwise.

In theory it should work seamlessly, but there are a lot of points where the handoff/execution fails. There was a closer hub a half hour away, but due to living a quarter mile under the cut off line, I couldn't travel there for treatment. Made no damn sense!

I've had the phone call apparently I'm not eligible because my symptoms are getting better and i've got to go through the whole sorry procedure again if it changes.

Does anyone have an iPhone? Does it actually tell you if you have a missed call or a phone message without you having to search for it? My chemo is delayed and they left a message on Friday but I never saw it as I wasn’t alerted to a new message.

im now stuck in the Golden Arches and everyone is being ever so nice to the bald lady with the hospital bracelet😀

@EachandEveryone if you go onto the recents screen from the phone app it should list all calls- and you can filter by missed calls at the top. It should show in red if missed. There should be a 1 on the voicemail icon at the bottom if a message was left?

Hello,

I’ve looked through threads but I can’t find this covered anywhere. I’m wondering if anyone is / has made decisions about chemo based on an Oncotype score in the borderline “grey” area. Mine was 20 and the oncologist says it’s a matter of personal choice. I’m in my forties, with bilateral breast cancer and family history, but clear lymph nodes and post menopausal.

I’m finding it a hard decision. Whilst it’s good to be cautious, the impact of 5 months chemo shouldn’t be underestimated…

Any other perspectives on this?

@postingpartum welcome to the thread.
I was told firmly that I needed chemotherapy at diagnosis with my two breast cancers. No choice was offered. More recently I have been offered six months of oral chemotherapy as an insurance policy. The oncologist said that without it my ten year survival chances are 85%. With the treatment it is 93% which has halved my chances of dying of cancer. This convinced me to take the treatment. Knowing the statistics helps you decide. If it only adds one or two percent it probably isn't worth it. The other way to look at it is what you would feel if the cancer comes back in the future. If you would regret not having thrown everything at the cancer early on then go for it.

Can you discuss this with your BCN? they are good at helping you sort out your thoughts.

I'm weary today after going to an Aquacise class this morning and my woo yoga session this afternoon. It's lovely to be beginning to resume normal activities though.
Hope everybody is healing and results are good this week.
Top x

Anyone know about blood tests?
cRP up but no obvious infection.
Neutrophils above high reference
Lymphocyctes below reference and total white blood cell way above.
Would appreciate any information, thank you.

Sorry I can't help with that @Gilead - are you waiting on a round of chemo? I hope it's not delayed if so.

Quick question from me to anyone who has nerve pain in their arm following node clearance. I've just finished chemo and mine has really flared up the last week or so. At first I thought it was because I'd been trying to do more exercise (I've had twinges before for a day or so after exercise) but I've laid off any exercise with my arm for a few days now and it hasn't got any better. Could it be chemo related? I've been on docetaxel which can cause peripheral neuropathy.

I'm feeling very anxious at the moment. Partly because I am still waiting on a schedule for further treatment. But more I think because my DDad is having tests for a possible blood cancer and has a results appointment in a couple of weeks' time. I am both worried for him, and also reliving all the anxiety of my own results appointment. (Fortunately my sister can take him - I pitched it to her as the logistics being tricky for me, but tbh, I'm not sure I could get through it in one piece and give him the support he needs.)

I’m home after my penultimate Zolendronic acid infusion. I wait to see whether I am in for side effects this time or not.

@Gilead the CRP means inflammation somewhere but is non specific. It could be infection or a sore joint. The neutrophils rise with a bacterial infection like an access, and often the lymphocytes drop too (They are the cells that fight viruses). Hope that helps.

@dotty2 I get pain from my full node clearance arm if I overdo things, or sometimes the nerve just seems irritated. I use a heat pack in my armpit. Do you get any swelling? Mine isn’t lymphoedema just post surgical swelling apparently. My hand doesn’t swell. Currently the newly operated arm is settling and less painful than the other one. That’s the benefit of only having had three nodes removed I think.

I am happier now I can go swimming and do yoga. I’m slowly increasing the intensity of my exercise classes. No news yet about radiotherapy dates.
Top

Abcess! FFS

Thanks @TopOfTheCliff . I don't think my upper arm is swollen where the pain is - I keep anxiously prodding it but can't be 100% sure as I still have some cording which makes it feel odd. My hand and lower arm definitely aren't swollen. So maybe it's nothing to worry about. Annoying though.

Did you mean you have an abscess? Surely not! You are definitely not due any more bad luck...

No! I was correcting my spelling in my reply to @Gilead whom I hope also escapes having an abcess. I am now definitely on the up. At last!

I see! Yes, let's hope everyone stays abscess free!

Im going to the work shop tomorrow. Im looking forward to it. Ive shaved my hair off now its very lumpy😃