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.

@Vaccine001 I think it's normal to try and find the reason when you first get a cancer diagnosis. I tied myself in knots trying to identify the cause yet I had never been properly ill in my life beforehand, no family history of any sort of cancer, I've tested negative for gene mutations, I am vegetarian and virtually teetotal, I was slim (not now lol) and I exercised a reasonable amount. All that coupled with the fact that OC accounts for only 2% of female cancers was even more confusing. I also think that well-meaning people advise us to cut back on sugar and eat 'leafy greens', kale being a popular suggestion, is their concern for us but also some of their own fear. If someone like me can get the disease they also fear the most, what has she done wrong? It's well known that I love cakes, biscuits, sweets and chocolate so it must be that right? I ran this by my onc and he said that cancer cells would just find another source of energy such as fat or protein in the absence of sugar and just to eat as healthily as possible with no restrictions. Having cancer is also miserable enough without some treats. My adult DD reasoned with me that the food trolley at the chemo unit is heaving with biscuits, Costa-style cakes, jelly, trifles, crisps and sandwiches and they encourage non-stop eating from it the whole day!

Having a cancer diagnosis evokes a lot of unexpected emotions, one of them for me is shame. I felt ashamed of the sorry state of my body, and felt 'responsible' for allowing myself to get like this although the rationale part of me knew I was being ridiculous. I still feel some shame now, two years later, if I'm perfectly honest.

Please feel free to offload on here as much as you wish to, you're not being selfish and no topic is off limits.

@TopOfTheCliff hoping your drugs have now arrived and so pleased you could remain at home.

@Vaccine001 I had 25 external radiotherapy sessions for stage 2 cervical cancer. I had the shits and felt drained, and a bit of brain fog (that could have been the chemo though). I worked through it and walked to all my appointments including up a massive hill!

Also had the internal radiotherapy. Did sedation and spinals that was totally painless. Had 5 sessions via three outpatient appointments. Had a bit of lower back pain for a few weeks after but didn't need more than ibuprofen for that.

I'm actually to blame for my cancer as it could have been avoided, however that is now in a box and filed away.

@chubbychipmonk how did you get on? I am in the same boat. Large lump on pelvis,
extreme weight loss, muscle weakness and fatigue. Been referred for urgent x-ray on 9 Dec, but waiting for a month now! I have a newborn baby who is 2 month old and I waited for
him seven years. I don’t see how this could be anything else than advanced cancer (doctor told me they were concerned) and I am breaking inside.

@Vaccine001 I had endometrial cancer stage 3A (so a bit in my ovary) but grade one endometriod adenocarcinoma and not very far into my uterine wall, and I feel reasonably confident that it has all gone and won't come back. I have changed my diet, although it was pretty good to begin with, but there are links between insulin resistance and endometrial cancer, and fat cells produce oestrogen, so as you have identified, it is good to keep weight down. I look at it as being about how can I create a body that is as well as it possibly can be to protect myself from recurrence or another new cancer developing or any other illness for that matter, and I actually feel better about my body now than for most of my adult life as a result.

@Whattodotomorrow there's a cold cap calculator here for the various regimes that tells you how successful it is scalpcoolingstudies.com/efficacy-calculator/ - there's also a Paxman Facebook group, where there's lots of good information, the NHS seems to use the Paxman machines. I had paclitaxel and carboplatin for endometrial and ovarian cancer, I was the first patient in my hospital to cold cap with this treatment, I don't know whether nobody asked before or what but I decided I wanted to. I'm glad I did, it was a bit of a faff but not painful, and whilst I have lost hair and have been wearing a wig for work. I can still wear a hat or a buff and I have hair poking out of it so I don't look like an obvious cancer patient, I can also walk around the house and feel pretty normal.

I was diagnosed with her +ve breast cancer in October 2019. Had 3 x EC, 3 x docetaxel and herceptin and perjita, followed by lumpectomy and mammoplasty (to reshape my boob), which left me a c cup and g cup (very lopsided! ). Then had radiotherapy and herceptin until Jan 2021. Paid for symmetarisation surgery as would have had to wait a min of 2 years and my mental health was in the toilet! I think that one of the best things I did was to get GP support and decent anti-anxiety medication which I still take. I still struggle with anxiety about it coming back and am fed up with the excess steroid weight that I just don't seem to get the motivation to shift. Currently waiting for ct results and feeling the fear again.

I tried cold capping, but it didn't work for me - the ice boots and mittens did work for the docetaxel and I got away with no nerve damage.

Hoping for a happier and healthier 2023 for everyone on the thread. Xx

Joining the new thread a little late.
I was diagnosed with grade 2 +++ BC following routine breast screening in March this year. Had 4 rounds of FEC which completely removed the tumour, surgery straight after followed by 4 rounds of Docetaxel as some live cancer cells were found following surgery. Ongoing Herceptin will take me to May 23, and I have radiotherapy sometime in Jan 23. Last chemo was end of Nov so starting to feel more normal again now.
Christmas has been nice, although my body needs a detox after too much nice food and months of relative inactivity and steroids.

Hello, I got diagnosed with BC and have had a masectomy and reconstruction. Just completed my first chemo which would have been okay except that I caught flu in my low immunity week, i was already very weak from the chemo. Thankfully, my bloods were okay so I didn't need a hospital stay but was on antibiotics for a couple of days. I have to say though that I have never had a flu so bad in entire life. I have still got a chesty cough from it.

I intend to start small exercises only because of my mental health, as for food I have give up sugar up to 95% which for me is quite a feat, not giving up anything else. @Vaccine001 please feel free to rant /talk on here as much as you like. That's what the thread is for. Here's hoping for a good 2023 for all of us.

Fantasea Id like to be at your chemo unit, biscuits, cakes, jellies ! We are lucky to get one of those pre packed cardboard sandwiches !

@Aretherenochoccies I know, it's really good! I was there about 7-8 hours per time and the trolley appeared once an hour. The lady in charge of the trolley would start her round in the waiting room! It was a really nice unit actually, the atmosphere was so light and friendly and the staff were just lovely. It was a total contrast to the attitude of some staff in other departments I've encountered on my journey. I'm loving your username btw!

@Anxiouslikenoneother I think maybe tomorrow you should ring radiology appointments and check they have your referral and explain you are terrified and losing sleep over this. Also give them your mobile number and ask for any cancellation. You need to be charming but persistent. They will really want to help! If I have misunderstood and you have already had the Xray then you need the radiologist to produce a report so ring the radiology secretaries and see where it is in the queue and beg to have it moved up. If they won't help ask your GP if they can do the same. (DOI I was a GP and this was bread and butter stuff to us chasing the hospital for patients we were worried about. Probably 25% of our workload chasing other people to do their job!)

I am feeling much better today after three doses of magic Paxlovid. Apart from a foul metallic taste it is fine. I also gave my selfish friend a broadside of plain speaking last night. Her partner now has Covid and she was looking for sympathy as her family have flown off to Bali after spending Christmas with her. All the travellers on their plane are now likely to get Covid. I don't care if she is offended. She is recklessly spreading Covid without any shame.

Hope the rest of you are enjoying family time and lots of nice things to eat and drink. One good thing about Covid is I have lost some weight!
Sending best wishes to all
Top xx

Does brachytherapy hurt at all?

@Vaccine001 I had 5 lots over three sessions. It did not hurt at all I had sedation and a spinal. It felt weird when the took it out but totally pain free, apparently it can hurt a bit if you e not had a vaginal birth but they have all the good drugs on offer!

Hi all, just thought I'd pop in to say hi and wish everyone the best possible Christmas & New Year.

Diagnosed with grade 2 stage 3 Her2- ER PR+ BC in August 2020. Tiny 12mm tumour with spread to 5 lymph nodes, extracapsular spread, lymphovascular invasion and all that jazz. Efficient little bastard. I was 39 then.
Lumpectomy, dose dense chemo (4x EC, 4x high dose Paclitaxel), 15 sessions of rads with a boost. Finished active treatment January 2021. Now Zoladex, Exemestane, Zoledronic Acid.

Exemestane is horrible and I've struggled with both carpal tunnel and plantar fasciitis, but then realised there was one specific brand (Accord) that gave me horrid side effects, so I avoid that one now and am much better. Can't shift the steroid weight that I gained during chemo though, and thanks to menopause it's all around my middle now. I've changed shape!

But 2022 was good. I caught up on all the travel that I missed (Florence, Fuerteventura, Malaga, Austrian Alps for fun, Seattle and Vegas -twice- for work, and a couple of trips to my mum's in Germany). I got a big promotion at work and my team doubled in size. Living in my dream house - a money pit that I was too scared to even consider buying before cancer - in my favourite town. Currently watching Christmas films with DS7 and DH, with two cats curled up in front of the fire.

If you're new to this thread: Hang in there. And make sure you find time to do what you love, even in all the chaos and upheaval. The good moments matter and will carry you through treatment!

I had 3 rounds of brachytherapy as an outpatient for vaginal cancer over 3 weeks. It was sore but didn’t hurt, my oncologist prescribed oromorph to help with the pain. Using topical oestrogen and medi honey post brachy really helps to heal any tissue damage. My oncologist now recommends both after I made her prescribe it and it healed my sore vulva in 3 days.

Thank you for your replies @JlL2013 @MrsPnut
Has anyone had the all clear as believe that the cancer will never come back?

@Vaccine001 I am sorry to say it doesn’t work like that. Some cancers are easier to treat than others and have a lower recurrence rate. When you finish treatment you hope to be told there is No Evidence of Disease (NED) and each time you are reviewed you hope to hear the same. After a certain number of years the risk of recurrence will drop low enough for the clinic to discharge you back on to normal screening for the population.
Some people never make it to NED, but their disease can be controlled with treatment for many years.
Oncologists rarely talk about a cure for cancer, although treatment may be intended to be curative rather than palliative. Do we believe the cancer will never come back? That is a mindset that depends on each individual and their circumstances. It is best to live your life to the full free of fear and anxiety but whether this is realistic or a form of denial is moot. I don’t think any of us ever quite throw off the lurking dread of recurrence but finding a balance is the knack to moving on with life and relegating cancer to a dusty corner that you inspect occasionally.
I have now had two cancers, one in each breast. They are apparently unrelated and the prognosis for both seems excellent. What shall I worry about? Recurrence of once of these? Or a third cancer? Or shall I just put this time in my life behind me and try to live without worrying constantly about my health?
I am a natural optimist so I am inclined to believe all will be well.
How about you?

Top

Vaccine I had no evidence of cancer after the 2 surgeries for breast cancer but they then still went on to do chemo, radio and 10 years hormone tablets and there is stated there was a high risk of reoccurrence. Each case will vary but for a lot of us there is a risk of reoccurrence and that's hard to get your head around. I like certainty but in the end I had to accept there would be no certainty and realise all I could do was do what I could to minimise the risk of it coming back so chemo, radio, hormone tablets and ideally 3 to 5 hours exercise a week now that's done. And then I have to get on with living. But it took me most of treatment to get to that point. Nevertheless there must be maybe a 50% chance it won't reoccur for me and also even with the reoccurrence that can be in 20 years time. I try not to think about reoccurrence much now, the only thing I find tricky is like things like pension planning as no idea if I will live to see that out or not.

But its important to do what living you can when you can, in treatment that might be a really nice day out once a month or a weekend away though do as much as you are able and these help a bit to get you through. Since my radio was finished in August I have been for 8 nights in Maldives, currently in Paris, going to a chateau with friends tomorrow, went for a beautiful walk with seals at Horsey beach on Boxing Day and go swimming twice a week and swim a mile each time. There are still annoying things like my hair is coming back out of control curls so had to cut in shorter though found a lovely velvet cap from Amazon which has cheered me up on that and my one breast is still chopped off and 3 year wait for reconstruction. Again found Ameona prothesis, actually use swimming one all time and that has improved that. If my son wasn't in hospital I would be pretty content with ,life right now.

Hello everybody - just checking in to the new thread after a few days of trying not to focus on anything cancer-related. We had our quietest Christmas ever, I think, with no hosting, and just the four of us (me, DH and two teen DDs). We ate easy food and played some games and there was plenty of time for lie-ins, tv and reading - one of my DDs managed to read a whole book on Christmas Day. I'm back to worrying about everyone and everything now, but it was a nice interlude.

Quick introduction - I'm 49 and diagnosed this summer with breast cancer, Grade 3, Stage 3 ER and PR+ (weakly),HER-. Lumpectomy and full node clearance - with 4 positive nodes and LVI. Part way through chemo, with RT and Abemaciclib and ovarian suppression/AIs/bisphosphonates to follow. I'm freelance and working through it all, but only about a third/half or so of my normal ideal workload.

Thinking about the question about ever being 'cured', my cancer has a very high risk of recurrence so I know that life won't ever be the same again, and I'll need to rethink some of my assumptions (about retirement etc). But tbh, at the moment, I find that all just Too Much. Even thinking ahead to the next stage of treatment is overwhelming for me - so I'm just focusing on where I am now and trying to find pleasure or at least calm where I can. It's not easy, though.

Im of the mindset that I'll deal with end of life and changing treatments when I need to cross those bridges, and not before. Worrying about them prematurely doesn't help, doesn't make it go away, doesn't change the outcome, so why waste time and mental space?

Actually there are liquid biopsy tests available based on circulating tumor DNA levels, but I believe are only available in the UK for Stage IV. The US is trialling some of these and some are commercially available now for early stage women, but the treatment protocols for positive results need to be ironed out more than they currently are.

www.ncbi.nlm.nih.gov/pmc/articles/PMC8773730/#:~:text=Breast%20cancer%20patients%20have%20higher,resistance%20mutations%20in%20advanced%20disease.

@TopOfTheCliff @Silkierabbit that is some great advice there. Really helpful.

I guess this is our new normal now.

I've got my first post treatment MRI on 3rd Jan, that comes with it's own worries, had a visual NED at the beginning of Dec so I've been able to relax a bit and enjoy Xmas.

@TopOfTheCliff thank you for your reply and advice, I did not have an x ray booked in but managed to get it booked for 6 Jan but it is still too far. I am getting progressively worse, the weakness and dizziness and short of breath. I called 111 for advice and I think they are going to send a non-urgent ambulance as no clinician was available to assess me.

I lost so much weight and I think I lost muscle mass too. I read somewhere that it is called cachexia and you only live up to three months with it, it is true? I am so terrified. My initial symptoms started a year and a half ago, I went to gp and he ordered a full spine mri. It was clear. But I guess they did not scan the pelvis and I think my cancer got missed. I then went on to be pregnant via ivf and had severe hip pain at night but attributed to the pregnancy, I was short of breath since august but also been told it is common In pregnancy and after the pregnancy I started losing weight And feeling weak but did not think much of it as it is hard looking after a newborn.

to make matters worse; my family are abroad and my husband who is an amazing person but due to some issues we had in the past he does not believe me about how poorly I am.

my Soul is crushing as my little 2 month old boy is so attached to me, and I can’t cope
with a thought that I might not be here around for long. I need help and don’t know how to get it. I just want it to be a bad dream, I feel so lonely and completely desperately sad

Just want to say that I hear your pain @Anxiouslikenoneother Try to remember that all your symptoms can be other things too. Hold on to hope. Sending love.

@Anxiouslikenoneother that is good news that you are going to get an assessment soon. Perhaps they can get some up to date blood tests arranged for you with your GP. There should be an urgent 2 week wait clinic for suspected bone cancer that you could be referred to. It seems nuts that you have to wait four weeks for an X-ray to see if you qualify for the urgent clinic. What is your relationship like with your GP? Can you explain how this is making you feel and ask for their help in moving things forward? It would help to have some anxiety medication but wouldn’t really move things on. I agree with @whyhere that there is still hope that it’s not as bad as you think. Try to hold onto that. Do you have a history of health anxiety? Is that why your DH isn’t listening to your concerns? We can all hear your fear and until this has been properly looked into nobody can reassure you. Sending love and strength xx
Top

Good news from Tops Towers is that we are recovering from the lurgy and will soon be able to see family again. After I blasted the selfish friend who was spreading her germs around she actually cancelled a lunch party she was due to give. I think it was because her partner and most of her guests were unwell with Covid already! But at least she realised she shouldn’t spread it further. I will have to offer an olive branch soon but DH and I are still upset at missing Christmas and all our DC have left and gone home without seeing us indoors. She can sweat a bit longer. Am I evil?

Sending peace and love to all xx Top

@Anxiouslikenoneother I'd just like to echo @whyhere and @TopOfTheCliff: you don't have a diagnosis yet, and until you do, this could be all sorts of things. I am really hearing you and understand the anxiety too well, but in one of my other cancer groups, we often say, "don't borrow tomorrow's sorrows".
Try to stay in the present until you know for certain. That attitude has got me through two biopsies to check if I have a recurrence, and a whole series of scans to check if I have bone mets, all in the last couple of years. And you know what? The bone issues were a very trapped nerve, and the lumps they biopsied were just scar tissue.

Sending love.

Thank you all for support, I am glad that this thread exists as I just found nowhere else to go. @TopOfTheCliff thanks so much again for advice. I have a gp appt tomorrow and will talk to them about it. I would not say that I have any kind of relationship with them but he seems like a person who would listen I think. I also had a catch up with my health visitor today (she is amazing) and she will also write to gp about my concerns.

I will try to push the worsest case scenario out of my head now but it’s not easy - I become breathless after just having a shower or carrying my baby around. I am feeling incredibly weak and the lump on my pelvis is about 5-7 cm big (the bit that protruding, who knows how much is inside). When I put it all together, nothing good comes to mind. I am not even that scared of cancer diagnosis I just want more time with my little son.

thank you @whyhere and @KentishMama , I feel like this is the only place (aside of my health visitor and my sister who I can only talk to on the phone to) where I am being heard. ❤️