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.

@Podgedodge this is totally the right thread for that question. You have been through hell and naturally you question the point of it all. I accept I am insanely optimistic (and annoying) but talking with my DD we agreed that you hold on for the future. After having cancer twice, breaking my leg, losing my DF suddenly and various other lesser disasters I am looking forward to better times. Both my DDs have got married recently, my DS has bought a house, and we have a puppy in the family. My DD wants a fit active granny for her future children. I’m fighting for that future and it will be sweet.

@thereisonlyoneofme could you maybe ring the surgery and ask to speak to the Practice manager? Ask for help, tell them you have a terminal diagnosis and no family and are struggling to get medication or speak to a GP. If your usual doctor is too busy/burned out/ off sick or retired could you be allocated a young one? I know my surgery team would bend over backwards in your circumstances so they probably are just oblivious to your situation. I wish I was nearer and could help you practically but if you want me to phone them for you DM me.

I am one week post op now and all is well. It’s a lot easier when they only take a sample LN instead of total clearance. Can’t drive but able to walk and declutter. I am binge watching Stacey Solomon. I’ve threatened DH I will volunteer us for the programme Sort your Life Out. He says he would just pedal away if that happened. Shall I do it? 105 bikes in the house isn’t normal or fun.

Love and strength to all, lurkers as well
Top

Morning all

I've just had a copy of the letter from the consultant to my gp. It says Ki-65 is 15%.
I'm a numbers person so stupidly looked up what that means....15 seems quite low to me but appears to be average. Looks like this is the number that determines whether you have chemo or not. My lump was grade 3.
My consultant appointment is on Monday morning and my daughter comes back to me from her dad's on Monday afternoon.
My mind is now in overdrive, I'd talked myself into maybe not needing chemo. Wish I could find out sooner so I can deal with it mentally.

I've just filled in all the details for the genetic testing too, want to give my daughter the heads up if possible.

All my mail is currently from the NHS!

@bringonyourwreckingball I forgot to reply to you above. I found Vaseline worked if my nose was just sore, but if it got infected I needed Naseptin which is an antibiotic nose cream. Hope it settles quickly for you as mine was bleeding and crusty all through Herceptin.

@LemonDrizzle10 it’s hard waiting for results day isn’t it. I’m trying not to think about it all. My motto is “It Will All Be Fine” repeated like a mantra.

@TopOfTheCliff my life mantra to date has been 'keep the faith'. The hospital have got me on their agenda for their meeting today, I'm hoping I can speak to my nurse this afternoon.

My friend had her op yesterday and is home today.

I've just bought myself a bit of jewellery in the sakes online - a treat for myself which will be a symbol to get me through this. It's a ring - the diameter of which is the same as my lump! I took it as a sign I should get it.

I hope your appointment goes well on Monday @LemonDrizzle10 and that your friend is recovering.

I too had surgery yesterday, a therapeutic mammoplasty. I am now the proud owner of an enormously bruised megaboob. It looks like something from an old Kenny Everett sketch!

Hope your feeling OK @KefaloniaKid a mega boob sounds impressive. Do you have the leopard print leggings to complete the outfit?

Spoke to my nurse today. My triple negative means that I'll need chemo and radiotherapy.
The good news is that I was able to have a shower this afternoon.

Do I risk having Lymph nodes removed that are cancerous and have lymphedema or risk not having them removed and rely on the radiotherapy and chemotherapy doing its job?

Sick with worry

@Hi01 only you can make that choice. I’d much rather have the nodes removed and do as much regular physio as necessary to try and avoid developing lymphedema. Did they say how many will be removed ?

Anyone taking Anastrozole and struggling with their breathing?

I've been taking it since April 2022 and 4-5 weeks later I started with breathing issues. I do have asthma and it's always been really well controlled up until last year.

I also had radiotherapy in March 22 and covid in April 22 so a lot going on around the same time. I've had X-rays and CT scans which say the radiotherapy hasn't damaged my lungs but there is signs of a healed infection. So....it's all a it of a mystery.

I am on Tamoxifen and recently finding breathing more difficult BG but like you not sure why. Mine could be radio as Aug 22, Tamoxifen, sinusitis or our cat bringing hay up from rabbit. It did improve with decongestant so am veering towards cat or sinusitis as the culprit. Anti histamines seem to help a bit. Have blocked nose with it. Strange though as fine in December. Bones are achy as well.

Hi I had lymph nodes removed a year ago and no lymphoedema as yet trying to exercise to cut risk, they said radio carried 8% risk after it. What I like is I know exactly how much cancer but dislike risk of lymphoedema. I noticed on a us site seemed to be a move there to radio due to lymphoedema risk though best to talk through with team as risks of both.

@LemonDrizzle10 funnily enough I do have a pair of leopard print leggings I bought for an 80’s party a few years ago!
I’m a little alarmed that megaboob had developed what I think is a large haematoma. Not sure whether this is concerning or not. Will call BCN in the morning.
How on earth can you wash your hair without getting all the dressings wet?

@Hi01 are you being given a choice? I was just told I needed a total axillary clearance as I had one large node affected. They took 30 out and no others were involved. I wonder sometimes whether it was necessary but at least I’m here to complain. I don’t have lymphoedema but I do get nerve pain in my arm sometimes. Now I’m doing it again on the other side they have said they don’t do a total clearance on the second side as it leaves you compromised. The sentinel node sampling is much less damaging to recover from.
You could ring Macmillan to discuss it. I understand your worry.

@KefaloniaKid you have made me smile tonight! At last an advantage of hair loss - I have no hair to wash after surgery. I’m thinking you need a waterproof cape over your shoulders and lean over a basin. Here’s hoping the mega boob behaves overnight.

@TopOfTheCliff yes you have it! I need a leopard print cape to complete my ensemble. Off to scour eBay now.
Megaboob trying hard to escape from the Royce bra but so far the poppers are holding firm.

@KefaloniaKid your comment about hair washing made me smile too. After my masectomy and reconstruction, I didn't have a proper wash for weeks. I did a towel down with soap and warm water. I was so relieved when the bandages came off.

I am starting docetacel soon and I am getting more anxious as the day approaches. I have had Epirubicin so far and the side effects were managable for me apart from the tiredness and weakness, i also had terrible migraines after the first cycle.
I really don't want to Google the side effects of Doxetacel, has anyone had it and what side effects did you have? I know we all react differently to chemo, I just need some kind of reassurance.

@thereisonlyoneofme I have been thinking about you, i hope you have managed to contact a doctor or practice manager at your GP practice. Sending you hugs and handholds.

@Hi01 i understand your anxiety but I guess the bottom line is you can live with the inconvenience of lymphoedema but if they don’t remove all the cancerous lymph nodes that has much bigger consequences. Remember, not everyone does get lymphoedema, it’s just a risk thing, as I said my aggressive treatment made me a prime candidate but I had a very rare form of breast cancer (around 2% of breast cancers) which hopefully is not your situation.

@KefaloniaKid hope the mega boob is OK this morning and didn't escape during the night.

I've got a waterproof dressing on my wounds, I'm into week two now which means I can put my arms above my shoulders to wash my hair. The shower was so nice after the shallow bath, face wash in sink, hair washed by a friend in the kitchen sink combo.

My nurse told me yesterday that my treatment will hopefully be complete by November! Two weeks ago she said August, one week ago she said September.

Is anyone working while they are having chemo? I'm hoping to work part time after a few more weeks off. A friend's son has been off work with his treatment since last October.

@Hi01
Did your consultant give you an indication of the probability of getting lymphoedema? Mine said it was a 20% chance.

Im working 21 hours a week, my employers are very good thankfully and I’ve been able to organise my shifts round the days before chemo. I’ve only had 2 chemo sessions so far.

@BG2015 I am on anastrozole and also have very well controlled asthma. While my breathing normally is ok I have found that it takes the slightest trigger (mild cold etc) to set off my chest and I’ll spend 4 or so days glued to the Ventolin which is very unusual for me. I’m mainly struggling with the joint pain after being still really.

@incognitodorrito sounds like you've got a good employer.
My friend (who had her op this week) and I both think that the Op is the easiest part - it's all the treatment afterwards that is truly daunting.
No one knows how they'll react to chemotherapy and radiotherapy. We've just both done 5 years through the family court to get rid of abusive exes - can't believe we're going through this together too.

@Makemineadecafplease - I am on the same chemo regime as you, and am on my second docetaxel cycle at the moment. I got myself in a bit of a state beforehand, having spent ages on the BreastCancerNow chemo monthly threads, where there are some tough stories of side effects. I think it's important to remember that people are more likely to post if they are having a tough time than managing OK. My chemo nurse said that in her experience, a lot of people find the dox slightly easier than the EC, in spite of the long list of potential side effects.

I'm not sure if I've found it easier or just different, but it hasn't been too bad. Things that have been better - less severe constipation as the anti-sickness medication needs to be less strong. And I've had fewer problems with brain fog/low mood, so have been finding it easier to work. I have had more niggly small side effects - bit of joint pain but mild and only for a couple of days, sore fingers under my nails (but not peripheral neuropathy), I get very dehydrated if I don't drink a ridiculous quantity of water, and a sore, dry mouth and altered taste. And dry, flaky skin. But otherwise, quite manageable and energy levels are good. Obviously, everyone is different but I hope that's somewhat reassuring?

That's a very good point about those not having trouble don't post about it.
My friend this morning said you only hear about people who have died, I told her about the many success stories that I know, positivity helps.
I'm going over all the shite thoughts in my mind right now so that I'm hopefully on an even keel when my daughter gets home on Monday. I've not told her yet - she thinks op was for something else. I need to know what's ahead and sort it in my own head first.
Has anyone else got young children? How have people dealt with telling them/family?
I obviously won't be able to keep things quiet whem my hair falls out, I'm assuming it will.

Today I have had to contact hospice team as no contacty, no n one there that can deal until Monday,quelle surprise,