Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@Fantasea I suppose it came up with my monthly blood test, I dont know if they test for blood sugar. Maybe its been there for previous tests, I find they dont tell you everything! I mentioned I thought I had a hernia, and they said oh yes, it was on your last two CT scans! Does your CA125 fluctuate generally, mine has been 14 all the time apart from once. I did have a flu jab the day before and wonder if that affected it, though Covid jabs never did.
Im going to worry till next months now. Know its going to recur but hoping for a long time before.

@thereisonlyoneofme My CA125 has been around 8 for a year and was 7 for two consecutive months and then last month 10. I've never had it rise by 3 points, it had only gone up by 1 at a time previously. I've read that a flu jab can make it rise so hope that's the explanation for you. I'm the same, I just lurch from one month's results to the next.

@SierraSapphire everyone has their own normal CA125, a bit like what is normal blood pressure for one person would be high or low for another. They look for trends and significant jumps but any rise upsets me. I think much of the problem for me is that I've been on my 'journey' for nearly 3 years now and have so little resilience left that any setback feels like a disaster.

Hi all, sorry to ask what may be a daft question. Phone call with biopsy results should be tomorrow so my anxiety is through the roof.
Those of you with malignant lumps in boobs, what did the lump feel like? Was it a marble? A pea? Smooth? Rough? Was it noticeably growing? Or staying the same? I made the mistake of going on Google this morning before talking to my mum who compared my boob to a horses hoof and so it's all spinning now

@dotty2 congratulations on your good news! We need to celebrate every positive in this thread.

@Ridingladybugs I am happily knitting Christmas bear hats for the babies in my life. It’s very soothing and keep my mind from going where it shouldn’t.

@marykateashley Google is not your friend! Lumps can be of any type or not even palpable so you can’t second guess what they are.( I am a doctor and I got it wrong). Good luck tomorrow I’ll be thinking of you. Try to stop poking the lump it just makes it sore!
sending calmness to you x

Top x

@TopOfTheCliff - I suspect I will be fairly terrible but that was my thinking - kind of soothing and distracting!

@marykateashley my lump was a cyst related to mastitis (my baby was nearly 5mo at the time) but the cancer was behind it where no one could have felt it. So actually the random benign lump saved my life, as cancer had already spread to two lymph nodes and I hadn’t a clue it was there. At the time they told me 90 odd percent of lumps seen in the breast clinic are benign. Mine was benign so I guess I’m in that statistic too! I haven’t taken this advice myself (and I’m a fool because it’s made my anxiety so much worse), but you must try to stay off Google. It really, really doesn’t help. ❤️

Hi all, first post on these threads. Sorry it's a long one but I wanted to gather my thoughts whilst they're fresh in my mind and see if anyone has a similar history,/how it's working out.

I found a breast lump late July and peomptly went to the GP who referred me under the 2 week wait. Ended up being 3 weeks wait because we were on holiday in between. I wasn't too worried given my age (41) and no family history).

Had the usual physical exam, mammogram, ultrasound and biopsy and the consultant told me there and then that she thought it was more than likely cancer. So I had an agonisng further 2 week wait for the biopsy result. When I went back she had questions/ concerns over the size/type
(I forget/didn't really take in all the technical terms but I was told to prepare for it to not necessarily be a simple one). So of course I was absolutely terrified whilst going throigh the next set of tests and awaiting various results.

But thankfully it did appear to to be just the one tumour, with no apparent spread to lymph nodes or anywhere else. I just had surgery yesterday and am now recovering on the ward. I feel really tired and dehydrated but otherwise not too bad at all at the moment and can walk around fine so I'm hoping to be discharged as soon as the doctor does their morning round...

I think they said I will come back in 3 weeks for results, scar check and to check next steps but it's likely to be a course of radiotherapy and 5 years of hormone therapy.

Now this is where it gets complicated. Right fromage 12 to 30's I suffered from horrendous periods. Extremely heavy bleeding/clotting/flooding, pain that could keep me double up in pain for days on end and extended into my back and legs, sore throat, vomiting and . Thr pill gave me migraines and mefenamic acid put me in hospital with a stomach ulcer. I had investigations twice, aged late teens and again maybe10 years later. Both times I was told I had a small fibroid but no obvious cause of my symptoms. I felt they were quite dismissive really, as though I was just complaining of a bit of a tummy ache.

So I limped on through with bed rest and paracetomol each month until my GP about 12 years ago suggested the Mirena coil. I can honestly say it's been life changing. I went down to 1-2 days of light bleeding, slight irritability and occasional mild cramping.

I had the first Mirena removed after 3 years as we wanted to start a family. Thankfully we conceived fairly quickly both times and full-term breast feeding kept my periods at bay for a good while so I only had I think 3 periods in 5 years (thoigh they were every bit as horrific). Following the return of my period after DC2 I had a new Mirena put in, and all was well until August of this year when I had a random heavy 12 day long bleed. I was referred for a pelvic and transvaginal ultrasound.

As if that's not enough I've had terrible lower back pain for a month or so, to the extent that some days I can't lift the kettle and need help getting out of bed.

And then 3 weeks ago we suffered a family bereavement which took us to the other end of the country for over a week. This forced mw to push back my back and pelvis appintments so I just had the US last Monday, first physio on Wednesday and got the US results on Friday afternoon just gone. So all in all I barely thought about the breast cancer until this weekend, but the distractions were hardly welcome ones.

The call from the GP on Friday has me worried. The "small" fibroid now measures 11cm and I also have pelvic congestion. It's possible that these issues are causing the back pain.

As my cancer is oestrogen/progesterone receptive it's been suggested that perhaps I should have the Mirena removed. Which terrifies me as I can't cope with periods like I used to have, and my breast nurse (who I only spoke to yesterday because I'd only got the results on Friday) thinks that because I'm clearly highly sensitive to hormone fluctuations, I could be very affected emotionally by the hormone treatment for the cancer.

So many questions and no answers until I speak to my breast consultant, oncology team and gynae (plus I think I need to get my back scanned) but I'm worried sick about it all.

My schooling and early working life was severely disrupted due to my period issues, but I really think it's largely down to the Mirena that I've built a very good life with an amazing DH, 2 wonderful DC, a nice house, a busy and active lifestyle and a very flexible and fairly well paid part time job that I enjoy.

I'm terrified that I'm going to end up with frequent bouts of severe illness and depression again, only this tine it'll be even worse because I've got a family to care for and bills to pay.

Thanks to anyone who got to the end.

Any words of support welcome but I'd be particularly interested to hear from anyone else with a similarly difficult combination of issues.

Bloodybridget I normally lurk on this thread now, but had to message to say I'm so sorry to hear your news. You were so kind when I was diagnosed with breast cancer in October 2019, and we're always encouraging and supportive. I hope you're home and surrounded by people you love. Cancer is shit and so so unfair.

@SundayAtDevilDirt that's a lot to deal with. I'm working so only a quick response for now - I had endometrial cancer and I thought treating with progesterone to hold off the development was one of the ways they tried to preserve women's fertility if they had EC or to reverse pre-cancerous changes, the Mirena was what I was offered when they thought it was just hyperplasia. It might be worth googling endometrial cancer and fertility sparing treatment. The oestrogen is more of a problem I thought (most are oestrogen receptive).

@SundayAtDevilDirt Your apprehension about Mirena removal in this situation is understandable. Have you been given any options yet for dealing with menstrual disruption & the fibroid issue? I don't think it's fair to suggest removal without a plan in place.

On the non-physical side there will be meds and counselling that can support you if needed. If you don't have anything in place now, it might be worth looking into something like relaxation/anxiety-reducing techniques, meditation, an absorbing hobby, groups, exercise etc so you have something to fall back on if you do find yourself in a bad place. If the breast care nurse has already mentioned it, I would hope she'd have suggestions for dealing with it too & could refer you on if necessary.

@SundayAtDevilDirt - that sounds really tough, I'm sorry. I don't have practical advice, but agree with PPs that the answer can't just be to remove the Mirena without an alternative. I suspect this might be one of those situations where you need to be a strong advocate for yourself, and make sure the degree of seriousness of your concerns is taken seriously.

@TopOfTheCliff Yes, obviously 'congratulations, you don't have cancer in your liver' is only good news in the context of an overall flood of bad news, but it's definitely good news to celebrate nevertheless.

@SundayAtDevilDirt - I’m so sorry to hear all that you are going through. Fibroids and the associated pain and heavy periods are one thing I do know about. I’d agree with others that you should ask for a plan for the fibroid before they remove the Mirena - there are a lot of different options now for dealing with fibroids ( although the wait lists for surgical options are long) which hopefully you can explore with a gynae. For example I am currently on a total hormone blocker ( which of course may or may not be applicable to you - but just to give an example). Although this comes with its own side effects ( basically puts you into menopause) it does completely stop periods.

Wishing you lots of luck.

Going in for my mastectomy tomorrow, do husband's/partners usually wait around until you come round from the surgery or just drop you off?

Hope tomorrow goes smoothly for you @fudgecat - in my experience the anticipation is the worst bit. Roll on this time tomorrow!

DH dropped me off at 7 am for my lumpectomy, and was supposed to wait for a call to collect me (I didn't need to stay overnight). He arrived about 7 pm to collect me, and as I'd had late surgery, I was just about ready. I took a couple of easy reading magazines, but spent most of my time chatting to the very lovely lady in the next bed.

Look forward to hearing that the op is out of the way!

Good luck for tomorrow @fudgecat In my experience you should get dropped off and picked up separately as there is loads of waiting around before surgery; it may be a long/complex surgery or others on the list will be & everything will run late. Are you not staying in overnight at all?

Personally I’ve hit rock bottom. But I bet there’s still room to fall.

I’ve been off my new meds for over a week as they made me too nauseous to function. Onc was on holiday; no-one else would deal with me. I simply need a dose reduction. Finally spoke to oncologist on phone this morning. She steam-rollered me as usual. Yes she will reduce dose but she has said I can’t pick up those meds until Nov 8 as they run in 3 week cycles. Despite the fact they are PILLS that can be dispensed from the pharmacy. I don’t require a chair in a ward for hours; specialist nursing; or anything else at all. Just the pills. She interrupted me, talked over me, and gave me a lecture about how so many people all over the country are waiting for treatment.

So that’s three weeks without meds while the cancer runs rampant in my body. I’m
in a lot of pain. Just neck some morphine & shut up, eh. If I didn’t have a small daughter I would be on my way to Dignitas by now, I really would. The rampant stupidity of the NHS has done me in.

I feel completely defeated and wholly removed from who I used to be as a person.

@mowly77 sorry you are having such a shitty time, do you know when your usual doctor is back? Might be worth pestering their secretary to be the first patient they deal with when they get back.

Yeah I'm on the afternoon surgery list so will be staying overnight, probably the best idea with 4 kids at home.

@ajandjjmum I've packed a book but might stop for a magazine on the way as I doubt I'll be able to concentrate on much. Have juice carton and maltesasers ready to go in the bag!

@mowly77 I am responding to your desperation as your oncologist seems so harsh! I don’t blame you for despairing.
Have you got the higher dose medication? Could you just cut them in half and take the reduced dose off your own initiative? They won’t even know, and you would at least feel you are getting some treatment while you wait for the new dose. Have you got antiemetics at home? I have a huge stash of domperidone as they keep giving me more even when I tell them I don’t need them in my goody bag.

I am having an interesting time. I have a very talented relative who is a portrait artist. I asked them if they would like to draw me bald and grimly determined to get through chemotherapy.The result is amazing but not very pretty! I am quite proud of myself while horrified at how I look. I’m not sure how I feel about showing people the picture but I’m glad to have captured this awful time in my life.
I am pottering slowly though the week. Time is passing very slowly.
Sending best wishes to all
Top x

Good luck tomorrow @fudgecat !

@mowly77 sorry to hear things are so crap. It's so frustrating when things seem obvious and simple but no one seems able to act outside of protocols. It's appalled she lectured you about other people needing treatment. This is why cancer rates will continue to increase, we're all conditioned to not trouble them and look after the NHS when it should be looking after us.

She's fucking awful @TopOfTheCliff ! I have very much considered cutting the 125mg tablets up but the internet very much says not to ... they are palbociclib; maybe the dose is not distributed fully throughout the whole tablet?? Maybe there are Reasons that certain pills cannot be cut up?? These are rhetorical questions. I am very tempted to cut them up.

@fudgecat that is my normal oncologist! I am trying to move hospital trusts as I have had such a dreadful experience all round.

Thank you for the support anyway, yes it is APPALLING that she lectured me about other people needing treatment. I just cried and cried and cried and gave up.

I'm going to have to brace myself & call again tomorrow & see if my BCN can help but she's useless, so that's great. If it's not sorted tomorrow then Dr Appalling will be off to her private practice Friday & Monday.

@fudgecat snacks are a good idea, with hospital food being so disgusting. Ear plugs. Eye mask. Although hopefully the pain meds will have you nice and sleepy. Headphones and a phone or tablet loaded up with podcasts etc may be an idea if you find you can't concentrate on a book. Good luck!

@TopOfTheCliff I like the sound of your horrifying portrait. Maybe one to put in a folder to look at from time to time in the future rather than framed above your bed... when I had cancer the first time I painted a marvellous picture of a cockroach for some reason. It represented how disgusting the chemotherapy was making me feel. I can't bear to have it framed around the house but I come across it from time to time when I have a tidy up. God knows what I would paint now ... a whole swarm of cockroaches wouldn't be enough.

Mowly. I don’t have any wise words but I am raging at your oncologist on your behalf. How can she treat you like that. I’m so sorry.

My first post here. I'm totally beside myself.
I went to the Gp Nov 21. Bleeding everytime I went to the poo. No pain just blood. I'd had same 2019, and was referred under 2WW. Colonoscopy and endoscopy done. Nothing. Only piles. 'We will look to do something about those if they become a real issue'.
As I'd gone that day with 2 issues, it was deemed the other problem (pain lower left) they'd do an internal scan (check ovaries) on 2WW. Bleeding referral would be 30 week wait.
ovaries checked and I have a 2cm cyst. Deemed nothing to worry about.
I took myself to a and e About my Bleeding 7 week ago. Things then got moving.. Despite keep calling Dr for movement on ref. Seeing Livi Dr, online consultations too. I wasn't hard enough to insist on being seen. I was patient. The NHS is struggling I wanted to be understanding, but here I now find myself.
I have had a flexiscope on 16th, 'he told me it's an ulcer' in my rectum. Mri 24th and ct yesterday. I checked Nhs app to see if any news and there in black and white malignant tumour in rectum...Tried calling Dr.. 18th in queue..
Any good news for me anyone?. Xx

@mowly77 how utterly dreadful for you to have to be spoken to that, shame on her. Speaking to a cancer patient about how fortunate they are to be getting treatment must be the lowest point of patient degradation. I'm so sorry you had to put up with this, of course you feel desperate. @TopOfTheCliff will know best but I think one of the reasons they advise certain tablets shouldn't be cut in half is so that patients won't cut it precisely enough. With your chemo tablets, even if it were not exactly half, it would be near enough. Alternatively, and this is something I've read that ladies on my maintenance chemo tablets do when a dose reduction has been prescribed, is take the whole tablet every other day. I'm mindful that you might get the appalling nausea on the day you take it doing this though. Would your GP be able to prescribe some more effective anti-sickness tablets for you? I was given some which I put high up under my top lip and it soaked into the gum, it stopped active vomiting and nausea very well for me. I totally get though that when you're in the depths of despair, even making a call to the GP is another mountain to climb.

@dustybluebell so sorry you find yourself here, you must be in total shock having to find out that way, how awful. Did you manage to get through to the doctor? I have ovarian cancer so no direct experience of bowel cancer, but other ladies will be able to help and advise you better.

@dustybluebell

So sorry you're here. (I had surgery 3 yrs ago for a tumour in my transverse colon. Now in the middle of my 3 yr review. Colonoscopy clear. Waiting for CT results.)
I don't understand how the NHS App works, but are you sure it's an actual result rather than the reason you had the CT/MRI? May be clutching at straws, but the way things are at the moment that's a v quick turnaround for results. My CT scan was 8 days ago and I was told that it would take a week for a radiologist to report to Colo-rectal. And, ime, there will be a delay there as well especially if it has to go before the MDT. But obvs there's a lot of variation, depending on staff shortages.
Hope you've managed to talk to your GP.