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.

I’m still silently lurking and reading this thread and just wanted to thank the experience on here too. Wise words that will hopefully come back to me in the middle of the night.
I'm trying to rationalise that I didn’t have a weakness in my arm two weeks ago so the current feeling now is just my brain playing tricks. Surely the cancer can’t move that quickly? I’ve a Ct scan this Friday - another card to add to the pile.
I just want to start the chemo treatment and get on with it.

@Anxiouslikenoneother i hope your appointment goes well tomorrow.
@TopOfTheCliff i think people like your ‘friend’ are oblivious…if they aren’t told then they will never have the self awareness and emotional intelligence to learn. She still may not, but hopefully it gives you chance to say your part.

Hi all, just to update - my gp was very sympathetic and spent quite a long time with me. He did an uneventful referral to bone cancer specialist within the two weeks so this is good as will speed things up, thank you @TopOfTheCliff again. He preempted me asking him but I came prepared so would have asked for the referral if he did not suggest it. The fact that he did makes me trust him more.

I feel a little calmer and just going to wait to see what I will be told at the specialist appointment before jumping to the very worst case scenario.

I will keep you updated if this is okay? thank so much for all the support.

@Whattodotomorrow best of luck with your scan, at least it is tomorrow so not too long to wait now. Treat yourself to a nice evening afterwards. I am breastfeeding otherwise would be opening a red!

I’m a bit late to the new thread but I had a provisional stage 1 grade 1 breast cancer diagnosis on 23rd December.

Does anyone know how an invasive tubular carcinoma differs from an invasive ductal carcinoma? I apparently have the tubular form. This wasn’t mentioned when I was given the diagnosis last week but the consultant referred to it in his post-clinic letter to my GP.

I’m really keen to get on with the lumpectomy but it will be 4-6 weeks until my surgery. Seems like forever to wait and I feel fed up that my diagnosis had to fall at the worst time of year as of course there is a backlog due to Christmas and New Year.

Sorry for moaning.

Hi all, hope everyone had a lovely Xmas.

So I have been officially diagnosed with Invasive Ductal Carcinoma grade 3. It's is Oestrogen positive & still waiting for HER2 test to come back to see if I need chemo first prior to lumpectomy. Doesn't appear from scan to have spread to my lymph nodes but they will remove 1 during lumpectomy to check.

Lumpectomy provisionally booked for 10th Jan.

I can't get my head around it all. I'm 44 & fit & healthy so preparing for a high possibility of needing chemo.

Has anyone been in this position with this diagnosis. The 'grade 3' part has me totally freaking out. Feel like I've just been given a death sentence.

Hi @chubbychipmonk
I think you were also diagnosed at the same time as me so I completely understand your worry and anxiety. It's good news that there seems to be no sign in the lymph nodes so try to hold onto that. Have they given you a provisional stage yet?

Hi! I asked about stage & no stage given yet. . Do they only give you that once they take the lump out & send it away for further testing? X

Hello @chubbychipmonk - you sound in a very similar position to me. I was diagnosed in August. I'm a bit older than you - 49, but also otherwise fit and healthy. I found out straight away that my tumour was ER+, but also had to wait for the HER results to come back before I had a confirmed plan, as I would have had chemo first if it had been positive (it was negative). Mine was Grade 3 too, and I also felt like I'd been given a death sentence, and it was a huge shock as everyone who had felt or examined my lump said that it was low suspicion/not of immediate concern. I also knew it was in at least one lymph node at diagnosis (it's much better if it isn't).

I had surgery in September, which I found quite easy to recover from, and am mid way through chemo. Chemo does feel like a long haul, but I am trying to stay positive, and I don't actually feel all that bad most days - I've certainly felt poorlier at other points in my life (for me, it's not as bad as Covid, or as bad as recovering from a caesarean with a sleepless newborn). I've been out to shop for a new sofa and for a treaty lunch today, for example. So don't despair if you do need chemo.

The fact it's Grade 3 obviously makes the risk of spread higher, but I did read somewhere that there is evidence that higher grade tumours can respond better to chemo, as chemo targets cells that are actively dividing, and the rate of division is higher in a higher grade. I also find it helpful to know that Grade 1,2 and 3 aren't actually 3 completely different entities - there are many, many different types of tumour at a molecular level, and the grades are just one way of putting them into groups - and an old-fashioned way at that, which predates genomic sequencing. They are just statistically determined cut off points on a scale - or actually 3 scales which look at 3 different characteristics of the cells. I might not have explained that very well, but somehow that made it feel less scary to me.

I'm not trying to minimise the fear - I was very frightened at the beginning, and still am sometimes. But I have found that just taking things one step at a time helps - and as someone said upthread 'don't borrow tomorrow's sorrows'. (I hadn't heard that phrase before, and like it a lot.) Please keep posting and asking questions here if it helps. Sending positive thoughts.

Hi all. I am sorry to see so many new people on the thread no-one wants to join. I posted on previous threads, but am feeling really lost and lonely at the moment so only lurking, or mainly not reading cancer-related threads. I’m stage IV metastatic breast cancer after having estrogen+ BC 11 years ago; finding out I was a genetic carrier; and having all the risk-reducing surgeries including enduring a horrible sudden surgical menopause. I have a wonderful daughter who is 4 and an unpredictable partner. The dread and horror I feel at dying young and leaving my daughter with said partner and not seeing her grow up or guiding her on her way in life are with me daily and almost indescribable unless you are going through similar. There are not many stage IV ladies on here, although @HerbalRefreshment always has sound advice. I’m in more pain than before, feel very much like the cancer is spreading, and am not in a good place. Scan on January 6. But I’m wishing everyone else good luck with results and waits and covid drugs and everything. Sadly this is a brutal disease and we won’t all make it. I won’t make it. But I had 11 cancer-free years and I really did put it to the back of my mind as much as possible and live life, so what recklessly, now I have a small daughter whose world I am going to shatter.

I also feel incredibly guilty about not exercising as I know that could or possibly would make me feel better. But I’m knackered. It’s a vicious circle of being too ill to exercise and then remaining I’ll and run down because I’m not exercising. I did 16 rounds of paclitaxel between April and September but it only worked for the first three months. Now on oral targeted therapy drugs but after just two cycles my white blood count is fucked and I’ve got to take two weeks off. They’ve taken it out of me. Not feeling at all positive (not that I should have to or anyone should have to) but I don’t want to derail this thread. I feel like the ghost at the feast, frankly.

@mowly77 I just wanted to say your post went straight to my heart. I'm lurking again (got all clear in May) but back on 2 wk pathway now). Sending all my love to you and your daughter.

@mowly77 Try not to despair about those low WBC, it happens to pretty much EVERYONE on that first cycle, hence why they do two blood pulls a month at the start. I went to 100 right away after the first cycle and then dropped to 75 eventually at the end (palbo, are you on that or another?). I just dragged aaaassss on the CDK 4/6s and frankly was thrilled to see the back of them because I felt sniffly and crap at least one week out of 4. I agree, its not a nice feeling at all. You also just came through a lot of chemo AND have that other blood thing, so its a lot on the ol' marrow. Can you get a short walk in every day, just to start? I see we scan within two days of each other - Im still nervous about this hip pain though it seems to be responding to PT exercises, and they are changing imaging modalities so christ knows what else they are going to find outside the 'normal' scan fields of spine + chest/abdomen. Good luck on the 4th!

Sorry, I meant the 6th... sheesh, maybe Im the one who scans on the 4th? Too many appointments lately, better check the letter!

Ha go check @HerbalRefreshment I have to check when my results appt with onc is as I can’t find letter anywhere now. Too many appointments also. I have to arrange own blood tests at GP etc but nearer than going to hospital. Yes I am on Pablo and it’s not agreeing with me. I crapped out almost immediately at 125; now on 100, limped to finish the 2nd cycle. If the scan shows it’s doing anything at all (I’m not convinced) perhaps they’ll put me on 75. But I feel crap on it in general, definitely worse towards the end of the 21 days, constant sniffle, yes. Now off it for almost a week and today I feel sorta ok. I think walking or yoga and swimming are going to be easier when daughter starts school again as at least I can walk her to school and hopefully carry on if I’m already up and dressed. I have been taking it really, really easy this Christmas as felt so dreadful before it, and haven’t got dressed since erm Christmas Day quite possibly! Thanks for the advice you have cheered me slightly as always @HerbalRefreshment . I’m trying to live in the moment and not let the dark horrific thoughts take over. So right now I’m in cosy bed, wondering what Christmas cheese/chocolate/booze I might have a nibble of later, partner is behaving himself and watching a film with daughter, I spent all day yesterday playing with my delightful funny little girl and her new presents and it was just wonderful.

Dang I wrote an eloquent and witty long post and the iPad crashed and lost it!
Sending love @mowly77 this thread is just as much for you as anybody don’t hold back xxx sending love

I was going to recommend my favourite entry level exercise video. Look on YouTube for WebMD and his 5 minute warmup routine. It is easy peasy and makes me laugh.

I am finally FEELING BETTER so I am going to leave the three big Cs in 2022 and go into the new year without them. Hooray!
Top x

@mowly77 it IS the 4th! Ah wow, good to know. I get automated text messages for every appointment except scans for whatever reason. I've got my first complementary therapy tomorrow after complaining about stress/feeling over it all in September - I suppose it will be nice to have someone wave some scenty oil at me for a bit.

Also, are you on an AI or fulvestrant?

@mowly77 so sorry to read your update and praying your blood count will pick up enough for you to continue on your tablets. I'm sorry you feel so awful and wish I could say something to help. Please keep posting if you want to, this thread is for everyone here. Sending love Xxx.

While I think of it, I just wanted to let all the newcomers know that once you get a cancer diagnosis you're entitled to free NHS prescriptions. I know some people get given this information early on but I didn't and only found out by chance some time after my diagnosis. It's a really simple form from the GP, just personal details and you tick the cancer box, the GP signs it and you send it off.

Ah good. I ONLY get automated texts for scans and nothing else … all paper; easily lost. The NHS is truly baffling …

And yes I’m on letrozole too. It’s not too bad, just raging hot flushes and night sweats and some joint pain. I wonder which drug is doing the heavy lifting so to speak … I know they’re totally different and do very separate things but maybe some people tolerate one more than the other or one works better than the other depending on the individual … I’ll ask and see if I can get a straight answer.

Hello everyone. I've name changed for this. I hope it's OK for me to join this thread.
After a breast cancer diagnosis, mastectomy and finishing radiotherapy, I'm now awaiting the results of a biopsy for pancreatic cancer. I'm trying to stay positive, but not feeling it today. I'm normally quite upbeat, it's just getting me down a bit at the moment.

Glad you have returned Mowly but sorry things are looking bleak. Am glad there are still some good days. Floof is getting big, 7kgs now, and sends his love.

Currently in France with MIL who is 89. She is making amazing food still but I could do with out her comments. She told DD she was fat (DD is really thin and possibly underweight), me I had got fat with cancer treatment and says I do not need to hide as "I have no hair" (I do have hair but put on a velvet cap otherwise she will make comments about the hair but this is frustrating her as she wants to make fun of my hair). And apparently I don't have good health because I don't drink wine and wine is good for you. Yes that's were I went wrong. Until 2 January left, thought there would be a day off at a friends chateau but she has gone and got herself invited and in the car with us, oh joy. Still her cooking is amazing and not seen her for 2 years.

Welcome @Notagainst and sorry to hear your story. “ It’s just getting me down a bit” is a bit of a masterly understatement. You must be raging! It’s bloody unfair and you don’t deserve such bad luck. How long till you get results? Have you been in pain or unwell for them to look? No need to answer if you don’t want to. Sending strength xx Top

I shan’t linger as I don’t really belong here, but in response to the PP who was concerned about cancer always coming back, I had colon cancer (T4 - highly invasive) 15 years ago and I am still NED. Unfortunately my GP did not believe that anything could be seriously wrong, I was not referred and ended up in surgery via the ED. I eventually got diagnosed with a genetic condition (Lynch syndrome) and have annual cancer checks and scans - preventative surgery is also on offer. I still feel the fear but I know that the particular cancer for which I had surgery and chemo has been terminally zapped. My little boy needs me to stick around so I dutifully attend all my tests and scans even though I sometimes feel a fraud when they’re completely normal again <touch wood>

All the best to everyone on here. Over and out.

@Silkierabbit you have the patience of a saint. My sister has similar issues with her French MIL. I would have hated hearing her body shaming your DD. I have been increasingly speaking my mind to rude and inconsiderate people and those taking advantage of others. My lovely in laws are the nicest people but get walked over by others. I have become the family Rottweiler seeing off trouble. I think all the recent suffering has given me a much lower threshold for tolerating bullshit. Getting older has many advantages and not caring what rude people think is one of them. But I appreciate there would be fall out if you were firm and she took offence. How much longer are you visiting for?

Top

Really sorry @mowly77 you're feeling so low, it's not surprising. When I started chemo, I bought a cheap exercise bike from Argos for about £70. It's sits between the dining room living room and I was getting on it in my pyjamas to pedal for a bit in front of the telly. I didn't get me out of breath but it did raise my heart rate and was incredibly easy to do.

On the topic of it not coming back, I found out my cousin who is now in her 60s who lives abroad, and I have only recently been back in contact with had stage four breast cancer in 2000, and she is now absolutely fine!

I am joining Top in the Covid club, I've had it since Tuesday, I was very achy to begin with but that seems to have gone and I've just got a sore throat and a cough, but it's bloody annoying that I can't get out and do the socialising I'd intended to, there's people I've not seen all year because of the cancer that I would've liked to have got out and done something with. I'm mainly on my own as my DD is back from uni, but she's running around doing things with her friends. The crap weather means I probably feel less like I'm missing out on things though!

I have no words so thought maybe this sunrise pic might express better.