Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Hi everyone. Met my oncologist today and she was fantastic. Down to earth and so respectful of me and laughed at my red book of pre-prepared questions taking time to answer Them. Tumour is T1 N1 M0. I was very unlucky to have node involvement and only for that no chemo would be necessary. However I choose to see it as a blessing as chemo will target anything that hasn't been seen or found. I was shocked at how little benefit chemo offered at my stage 5-6 -% in terms of recurrence. Confirmation of total resection R0. So this is positive. No residual cancer seen after surgery. Tumour was missmatch repair intact which she said did not indicate genetic cause and unlikely to be connected to Lynch. Treatment is 6cycles if capecitabine tablets. 2 weeks of tablets. One week off. Then repeat. Side effects sound scary. Didn't ask about stats. Don't want to know. They don't mean much to me as statistically I was low risk but got this cancer anyway.

It's good to have a plan in place. Thank you everyone who has comforted me advised me and allowed me to vent over the past 6 months.

Fuck You Cancer!

Good night everyone. I'm in bed and actually not crying, I'm so thankful to you all

Thanks for the welcome and good luck to everyone in their fight.
So further investigations have confirmed the cancer, three sites with the bowel being the primary. MDT meeting is on Monday and I should get a protocol then. In the mean time just need to get out of hospital and home to DH and DCs (all are in shock).
The enormity of it all is starting to hit and spent most of this afternoon in tears 😞. I need to get through this and out the other side in one piece.
Take care everyone

That does sound a lot to take in, Chocolate. I’m sorry, but I don’t know what an MDT is. Have you found out yet if there is lymph node involvement?

Tean792- what tests are you waiting for? This part is generally awful- we call it scanxiety here!

Love to everyone

I couldn't take in the tests. One minute I was waiting for surgery which was going to be the worst bit, the next I was hearing how that might just be the start of it all.... I've planned a busy day today,to try not to think ahead.

You can probably find out more from your BCN, as you weren’t taking in stuff (very normal)

What type of breast cancer was it? And what was the staging (then/now)?

The tests are colonoscopy and poo test etc. That's why I'm so scared.

Warm thought to all the new people waiting for tests and further tests - a very anxious time but hopefully a plan of some sort at the end of the tunnel

@Bloodybridget I made a chilli-free veg dahl last night - what a mistake. What was I thinking, having already had cramps and runs since the weekend. I won't be doing that again Just crave some of my trusty favourites sometimes. Also not looking forward to 4-5 months more chemo which I am finding quite challenging. I find my mental resilience is pegged to my chemo issues and I'm trying to figure out how to separate them. I've just left a message with my Macmillan nurse for a chat.

Thank you all for the advise about returning to work. I am lucky that I can do a phased return and have spoken to OH. I think I am putting more pressure on myself by thinking that returning to work will mean I can put it all behind me and I guess it doesn't really work like that and I need to realise that I will have to learn to cope with cancer and work. I think I will give Macmillan a call just to talk things over and hopefully make me feel a bit more confident about returning.

@gillmoregirl - Don't worry about side-effects. The extreme ones are rare. I did 4 cycles and got away with only a bit of neuropathy in my finger tips. Soon learnt that I no longer have asbestos fingers when it comes to cooking. The main one for me was tiredness, which is cumulative. You don't really have good weeks, but I didn't have any bad ones either. Starmer has done the whole course so will know more.

I was given the choice of whether to have chemo or not. My surgeon said it probably wouldn't be worth it for me, at my age, unless it was 5% or more. My oncs both tutted and said, 'He shouldn't have said that.' One said it would probably be 2-3%. The other thought more than 5%. The benefits are much greater for higher stages. Seems to be controversial as to how to demarcate stages in colo-rectal. That rogue lymph node must have confused them a bit. V good to have a T1 tumour. Mine now seems to have been downgraded from T4 to T3. Hope it's not a typo!

@Starmer Hope your trial goes well. I keep getting asked whether I'm on blood-thinners, including aspirin - mainly by my dentist and a locum prescribing Naproxen for arthritis - so probably not a good idea to start taking aspirin now.

@Tean791
As others have said, this really is the worst bit. Have you had a CT scan? If not, they're probably just at the stage of ruling things out, worst case scenario first. My dm had a colonoscopy and endoscopy when she was v anaemic, just to see if she was losing blood somewhere internally. Both negative. In the end, I think they decided it was her diet. She was in the early stages of dementia and when we investigated we discovered she was existing on cup-a-soup and chocolate digestives.

I know it's difficult. Once you think there's a possibility of cancer- and you've had it before, you imagine the worst. But try not to get ahead of yourself. One day at a time...

Oh, god. Shitty news. Apparently I'm triple positive, likely stage 2 (small lump in one boob which I thought was a cyst related to breastfeeding), and this week am starting tests (mri, ct, bone and heart scans) ahead of meeting with my oncologist on Monday.

Course of action will likely be four months of chemo, surgery to remove the lump, though frankly if it looks like I have a genetic predisposition I may well be tempted to tell them to take both boobs and be done with it - it's not as though it would make a huge difference to my appearance ;) - then radiation.

Surgeon mentioned a course of Herceptin - can anyone tell me about this?

Also, did anyone have a port put in? The surgical procedure sounds pretty scary, but I'd be interested to know if people felt it was worth it to avoid lots of needles along the way. Or did any of you do without it, any not feel you needed it? (Bearing in mind I'll be in treatment for the next year, omg...)

Hi @backformore. I'm so sorry to hear your news. It's a lot to take in - hope you're surrounded by support tonight.

I have just started chemo for breast cancer with a PICC line because the oncologist advised it can get "distressing" to try to get a cannula in after a while. I was worried the PICC would be awkward, but so far it has been fine - I bought some covers for it online and I barely notice it. But like I say, it is early days.

I'm not sure about Herceptin as they have opted not to give it to me, because they think I am probably HER2 negative (they lost my results so can't be 100%). I think Herceptin does carry a risk of heart damage but, like chemo, it's another calculated risk. I'm sure someone far more knowledgeable will be along soon to fill you in!

Sending you, and everyone else on here, lots of good vibes. Sorry to read that so many are going through such shit times.

@backformore Sorry for you news I know it must be a shock - even when half-expected. I'm stage 3 Her+ . The Herceptin is given with my other chemo drugs for now, and I'll continue with it after surgery. I also get a cousin of Herceptin - Pertuzumab. These are both monoclonal antibodies so somewhat different to your classic general cytotoxic chemo drugs - they are very specific in action. They have their own and overlapping possible issues - but the specificity is useful and this is the upside of you being triple positive - lots of specific drugs.

I had a port fitted day before my second chemo last week - procedure was very smooth (I had A LOT of sedation - which I like they should just sedate for me for the next year...). It has taken a while to settle completely - just a bit tender still 8 days later and some sensation in arm and shoulder - not difficult just noticeable more than I was expecting. It does make chemo a lot easier though so I was keen to get it done as I have a tough time with all the cannulas. It's not as versatile as a PICC because of the specialist needle access - so they don't do routine bloods from it and if you want your scan dyes through it you need a power pump (mine isn't but I don't have that many scans). I preferred port to picc though as it's under the skin and I don't have to do anything with it. Personally I prefer having the port to not especially as I can have the post-surgery stuff through it as well.

Last week surgeon left the port needle in to use the next day - which sounds hideous but was fine. In general though, you put anaesthetic cream e.g. emla, on the port before access (because it's under the skin so needle still needs to access).

I totally hear you on the thought of being in treatment for over a year - I can hardly bear to think about it - just take it a little bit at a time, cross off one test and treatment at a time. We'll get there.

@AlbertCampion Very annoying about your lost biopsy!! I was wondering how you chemo went.

@AlbertCampion, thanks so much. I'll ask my oncologist about the PICC line, too, as a comparison. I had to muster all my bravery for the dye IV this evening at the MRI and was so proud of myself for getting through it without incident.

@Acinonyx2, thank you! I think I'm likely to start the Herceptin towards the end of chemo, and then on its own for a bit. Apparently it's not as bad in terms of nausea, hair loss, etc. so I'm already trying to think of it as an "easy" drug. Ha - crazy how our definitions change.

Encouraging to hear the port was a smooth experience for you. I was told today that it would also work for bloods, but I'll have to get them to confirm that. Lots of sedation sounds like the way to go. How are you feeling, two weeks into chemo?

Acinonyx2 the port sounds good but I can imagine it takes a while to get used to! You're v brave having it done when you've already started chemo - I am already so fed up of being prodded and poked around! Do you find the Emla works? I've been using it for my nightly stomach injections and it helps a bit but not completely. They're such a small thing and I know I am being silly but I absolutely dread them. I am generally quite squeamish and if someone had told me, a month ago, that I'd be injecting myself in the stomach nightly, I would never have believed them.

I am on day six of cycle one now and starting to feel slightly more human. I felt quite nauseous for the first two days but that was all. Then on Monday exhaustion hit and I could barely get out of bed. I have been in a fog ever since. Slightly sore mouth and still a bit of nausea but I am coping ok. Taking my temp constantly because I am terrified of infection!

@thymeout. I wonder about that lymph node too especially as tumour didn't breach wall or muscle. Hopefully it was a lone wolf and now in bin. I'm going into chemo with high hopes of few side effects and will take it from there. @Starmer has been great support to me.

My sister in law (with a phd in some kind of therapy) have me an impromptu counselling session during a socially distanced doorstep visit. I was being very positive about the future especially as DD was standing tight to me. SIL proceeds to advise I should grieve for the person I was so I can move on. WTF?? Again I ignored this and said how positive I was that chemo would sort me out and she said 'but you'll always have the fear of it count back'. No shit Sherlock! She is a lovely person but this is not what you need to hear.

Most people have been so lovely however I have had a few stupidly inappropriate comments. Thankfully I let these go over my head but you would think people would
Know better. 🤔

Wonder do Amazon sell this .......

Hi everyone.
No news here.
The images were finally sent to Sheffield today so...
The lack of any sort of rush/competance is really making me angry.
The secretary has promised to phone back today.
I'm just not sure what to do next.
I know I need to complain I just don't know who to!

@backformore If you get a power port then technically you can do everything, bloods included. I was told that in fact though, at my hospital, bloods are rarely done from the port unless you really can't get a vein as the needle access is more specialist and basically it's not considered worth it (so I didn't get a power pump). Your place may say differently though so do check that.

@AlbertCampion I was very anxious about having it done while in chemo - another nice lady on here (Z) had exactly the same though - day before second chemo so that really helped to reassure me. In fact it was originally scheduled day after chemo but I pushed to move it Bit disappointing that I had to push for the obvious. Honestly, I'm sure we could go head to head on squeamishness - I'm actually quite anxious about accessing the port properly next time. I'm pretty sure the emla won't really deal with it but it's not really the pain that is my problem (pain is merely a bodily sensation, grasshopper...) it really is squeamishness and messing about with multiple attempts that does my head in. Basically there is just no get out of jail free card whatever you do.

I think day 10 is when I really hope to see the light Hope you have a nice soft toothbrush - and a good alcohol-free mouth wash for your sore mouth. I get a lot of that too. (Bit sore other end too - maybe TMI?? )

@gillmoregirl There's always one. I'm pretty tolerant of stupid comments but I'm especially irritated by people who seem determined to tell me my prognosis as if I don't know and despite not having the details of my cancer - I always feel like saying: thanks - I'll let my dr know.

I know of 2 people irl on my chemo regime who are sailing through with hardly any side effects. Seems no 2 people are quite the same on chemo.

@Shrillharridan hopefully the wheels are properly in motion now. We're all waiting eagerly!

My case will be discussed at MDT next weds apparently

Morning, everyone (it's morning here - I'm in Canada) - and thanks again for the feedback and encouraging words.

Does anyone have any tips for middle of the night panic and dark thoughts? I went to bed feeling ok last night, and slept for a few hours, but then woke up and never really got back to sleep (thanks, 2 year-old son!). The anxiety really seemed to build up and my mind was racing, and I desperately need to find some tricks to manage this.

Was also sick this morning, which I put down to anxiety - though I wondered if the dye from the MRI might have had something to do with it?

@Shrillharridan speedy as usual I raised a complaint about the patient services at the hospital. My original consultant did apologise but the letter I finally go said they acknowledged no lack in communication and basically made me out to be a silly girl. I'm still chasing it as they ignored most of my complaint.

@gillmoregirl girl, I applaud you. I'd probably have resorted to violence! And I'm not prone to that type of thing.

Letter through from consultant and he states I'm moderately overweight...I'm strangely overjoyed by this Operation is in a private hospital and not the run down one I had my last surgery in. So more good news. My sons childminder also gave me flowers when I dropped him and a lovely card. I'm feeling loved today.

Thinking of everyone having a tough time.

sieze I know 🙄
I've written e mail complaintoh, s to the local hospital (pals) and the private one.
I imagine the chances of being seen before Xmas now are very slim.
Also I may have shingles :(

@backformore as it happens I was up with extreme dark thoughts in the night - I think it's steroid withdrawal in my case (I get extra steroids as I'm allergic to one of the drugs) but knowing that doesn't seem to help. I find music helps me - I make playlists. Also some reruns of series I can just watch over and over - Law and order is one of my go tos or find something funny - humour is a great tonic. Basically I find I need to break the chain of thought with something or it just snowballs. I ended up giving dh quite an earful of woe this morning (we are having some work/covid/money troubles as well which had tipped me over the edge) but it did feel like lancing a boil and was quite cathartic in the end (he has a very sunny disposition not easily sunk). So sometimes just letting it out of yourself, e.g. I keep a diary too.

This may not work for everyone but in those early days coming to terms with the diagnosis I let myself think about the worst that could happen and what would I actually do - how could I plan and prepare. So I hope for the best and plan for the worst. It may not work for you but it has helped me a lot. I know others prefer to only think positively but that just doesn't do it for me.

A lot of people get a prescription for something to help with anxiety and that might be worth asking about - I have some problems with that kind of med though so trying to avoid it (I have problems with drugs generally it seems )

Getting out for walks is really helping me a lot and I sleep better (although never more than 4-5 hours at a stretch).

@Acinonyx2 Yes, breaking the chain is so true! I've just had a good cry, which has also been cathartic. Will try the music idea, and am also going to ask about anxiety meds.

You're very right about walks - right now I just want to stay in bed and cry but I know exercise and fresh air would be better.

@backformore I have a few people scheduled to walk with me - that way I don't just sulk on the sofa. I nearly didn't go today - but friend texted to remind me and we went and had a great 2 hour walk and I felt so much better. Also - I read a paper that said walking 3-5 hours per week cuts relapse rate from breast cancer by 50%. Very motivating - every time I walk I feel like I'm really helping myself. The lower half of my body is going to be really fit.