Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Forgot to say that Covid has turned me into a sugar monster! I am not eating much but when I do eat it’s chocolate/cake! [ blush] Haven’t gained any weight, though.

@TopOfTheCliff

It's a bit Forest Gump, but must say how much I admire your ability to turn lemons into lemonade. Silver linings rock, says Pollyanna Prozac.

Thank you @Thymeout ! We reached Bristol then decided to throw money at the problem and paid for a taxi home. Now home drinking tea and delighted house and garden still intact.
@balkanscot glad you are slowly mending. No news is good news re the CT scan but I wish the staff understood how we put life on hold waiting for results. Just because THEY know the result is normal doesn’t magically stop US worrying until they share that with us.
Love to all
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@TopOfTheCliff I'm glad you are home safely, the weather wasn't too bad in my part of Devon a few flat roofs came off and a tree partially down at the aptly named Windy Corner.
I'm looking forward to next weekend and meeting the running group your daughter is organising
www.facebook.com/Torbay-Velopark-5k-Your-Way-Move-Against-Cancer-106530521939287
I'm not sure if that link will work but its a 5K walk/run for anyone living with or affected by cancer , location Torbay Velopark Devon

Is anyone else watching the Great Pottery Throwdown and crying their eyes out?

Just back from 3 nights away in Scotland and 1 night in Lake District and had a lovely time, nice to forget about cancer for a few days, well apart from the letter the hospital e-mailed me about chemo and the offer counselling call of from Maggies. Very glad for offer of counselling though if can escape chemo may be fine without. Prosigna results on 28th. Officially I was chemo recommended at 6% benefit over 10 years but I queried this as does not take into account lobular which has poor response to chemo and its only recommended from 5% benefit and 3% to 5% benefit they do prosigna test. The lobular likely takes benefit down to the 3% to 5%. The oncologist agreed and said it was borderline and could opt out as scared or do prosigna but only if I agreed to do chemo if high result.

I wanted to say no chemo but thought better to get results. Its for post menopausal women but they said as I am 48 it would be accurate enough. At least its quick 2 weeks for them to give me results at hospital. The oncologist said she expects will be low, not sure as needs to be under 15 to be low. She offered me 2 chemo regimes, a fast one of 4 doxy every 3 weeks which she said was almost as successful and lower risk and a longer one of 3 x EC and 3 x doxy I think. Would prefer shorter one. Well it says Epirubicin/ Cyclophosphamide every 3 weeks x 3 followed by Docetaxel every 3 weeks x 3 or Docetaxel/Cyclophosphamide every 3 weeks x 4.

Lovely time on holiday went swimming twice, only 3.5 weeks post surgery so could only do about 650 metres each time and first time chest stiff, second time more normal though had to invent new strokes at end like chicken flap backstroke as arm got tired. Saw Edinburgh castle, Forth Bridge, Zoo and Beatrix potters cottage and lovely candlelit dinner on last night and lovely breakfast this morning of apple and elderflower juice, coffee, fresh pink grapefruit, homemade toast and jam, smoked salmon and scrambled eggs.

Hope you are recovering OK MissSmiley and can get home soon if you are well enough.

Hope you feel better soon Balkan

Sorry you had to go into hospital TooNoisy but glad you got some good news.

I had lumpectomy/breast reduction surgery last Wednesday and have an appointment this Wednesday for the results and next steps. I thought I was doing reasonably well, but this morning I have bawled my eyes out; not unexpected or unreasonable, I suppose, but I'm not a cryer (sp?). It hasn't helped that my menopausal issues are back with a vengeance. I've been looking at whether Vagifem is safe to continue use and the jury seems to be out; I can't go back to UTIs and soreness though... I spoke to the consultant and my breast care nurse (who doesn't work on Mondays) before and they said it 'should' be fine to continue use - I need something more definitive than that!
Any advice?

Sorry you are feeling sad KnittedFairies Very normal to be emotional waiting for test results. Re Vagifem not sure I am pre-menopausal and ER and PR positive and was told no HRT but never been on it. Re UTIs I had a phase of getting loads and what stopped mine was when after 9 months of having them every 2 weeks or so and being really ill I ended up in hospital and they gave me double antibiotics for 2 weeks. Only have them once a year or so now.

So glad you got away @Silkierabbit. Sounds lovely
@Knittedfairies sending a hug. It’s such a tough time. I had to stop hrt before surgery, and had replens prescribed as I had a history of 6 months repeated infections which was awful. So far touch wood ( 6months) no problems
I am post menopausal and her + which may make a difference. Do check with oncologist for a definitive answer. Menopausal symptoms on top of cancer is s@#£.

You can get replens without a prescription

I hope you don’t mind me popping back on- I first joined you on the last thread at the beginning of December having been diagnosed with lobular breast cancer but I have been awol.
I have been burying my head in the sand, I think to try to cope because at each appointment I seem to get bad news so I have just kept insanely busy and pretend it’s not happening to me.
Initially, from the MRI, it was 2cm of lobular- the plan was lumpectomy, radiotherapy and tamoxifen, job done.
I have since had a therapeutic mammoplasty and 5 lymph nodes removed (clear- fab news!) to remove 3.5cm grade 2 invasive Ductal(!) within 7cm high grade DCIS, but not clear margins so further surgery planned for next Tuesday. My surgeon thinks he may get it all with re-excision so that’s the next step.
He’s also sent it off for oncotype testing. My NPI 3.67 so now ‘moderate risk’.
I am starting to have an internal panic that my prognosis is less good, that I may need chemo and that if none of the scans I had (mammo, ultrasound and MRI) showed what was in my left breast- what if something sinister is in my right breast as well?!
I am thrilled that my lymph nodes were clear and feel very lucky in that respect and also in how well I have been treated by the NHS and the amazing support I have had from family and friends who think that I am ’strong’ so I don’t feel that I can offload my worries to them, hence me blurting it out here! Sorry!
If you don’t mind, I will try to be more present as I think ‘spending time’ with folk in a similar position will help me be less ostrich like and help my mental health.

@niknak So sorry to hear you're having such a rough run of things. I hope that joining us here gives you some comfort.

Clear lymph nodes is a very good sign. My breast cancer experience has been similar to yours - at first the medical professionals seemed to think my cancer was very run of the mill and easy to treat, and then I seemed to get a worse story every appointment. I finished chemo before Christmas, radiotherapy a few weeks ago, and I'm about to start tamoxifen. I'm now cancer free (as far as I know) and recovering well from treatment. I hope you are in the same position soon.

I share your concerns about scans not picking things up - I have dense breast tissue and the mammogram, MRI and ultrasound gave hugely varying estimates of my tumour size. I worry that yearly mammograms won't be enough to find a deep tumour if I'm unlucky enough to get one (my tumour was close to the surface so easy to feel), so I'll be pushing for MRIs as well, and if the NHS won't offer that I'll look at getting a private one for peace of mind.

Welcome back Nik I have also been pretending its not happening and now at the is chemo happening next stage and getting as anxious as you can after being in la-la land before.

I initially had a plan of lumpectomy / mastectomy then radio then hormone tablets which I was OK with though the idea of menopause with extra symptoms and no help for 10 years does not sound great but have shelved that issue for later. I went with mastectomy as seen so often with lobular them not getting clear margins, also it was a 5cm cubed lump and I am not that big so lumpectomy felt not enough. I did have 1 lymph node positive then full clearance thankfully totally clear and they think all cancer out. Then got told Predict says 6% benefit of chemo over 10 years and they recommend it will be 4 to 6 months then radio then hormone tablets and they recommend from 5% and test from 3% to 5%.

When I saw oncologist for first time I queried this as has been found not very effective against lobular and 6% is all cancer types though with HER2 neg, tumour size, hormone positive etc accounted for but still. The oncologist agreed and said was a borderline case and could not do chemo and 94 women out of 100 don't benefit and I am likely to be in them. She also agreed to fund prosigna test (I had requested this but normally NHS won't pay with my results but are as an exception) so am waiting for that. Results on 28th.

Good luck with the results, my oncologist is offering 2 chemo regimes either Epirubicin / Cyclophosphamide every 3 weeks x 3 followed by Docetaxel every 3 weeks x 3 or Docetaxel / Cyclophosphamide every 3 weeks x 4. I am not sure at what result becomes recommended. She said high was strongly recommend chemo, I think low is recommend chemo but very borderline and not sure what intermediate is, guess depends how intermediate.

Hope your surgery goes well.

Thanks Thesandwich Was lovely to get away if only for a few days in terrible weather but still very enjoyable and you have to grab what you can. It did let me switch off for most of the break.

I like sewing will also be pushing for MRIs, my mammo and MRI were reasonably accurate but must have had it a long time before it got to that stage and mammos miss 50% of lobular.

I don't worry too much about other breast, MRI looked at both and it was clear and looked up stats for other breast and it was pretty low and I have plenty of other things to worry about with this so crossed that one off.

@Niknakpaddywhack hello, sorry you are having so much to deal with. Great advice from others here. So far once diagnosis was clear for me( took ages and several extra scans etc) surgery etc went ok, and now two chemo down, 10 to go which( touch wood) have not been any way as bad as I had feared. Please share how you feel with someone- here, via Macmillan, Bcn, or counselling- do you have a local breast cancer support group? Our local one is great, v supportive.
Love the photos @Silkierabbit

My hospital contacted Maggies for me and they have given me a number to call for when I get chemo results. I think its useful to find out about counselling before you get to crisis level, I didn't and it takes a bit to get put in place though 111 option 2 do eventually answer if an emergency but can take an hour or so here. Talking to people going through similar helps as well and feel free to DM me if you / anyone needs to. I may only be able to panic with you but can offer sympathy and hugs.

I also find it useful to note when I feel better, its when I am in la-la land but that only works for most of time and then when you are actually hit with reality you do tend to crash but still doing that as 90% of time I feel fine like that. Exercising 20 mins a day although sounds tedious I find helps my fitness, strength and mental health, I just do 20 mins aerobics type exercises from home, nothing very strenuous and includes the 5 mins a day arm exercises. When I am in panic mode then taking it stage by stage helps or just getting through that day. Like just think about surgery, deal with rest of plan later. Also if you are able to tackling the worries one by one can help. I also just read one technique is to add a positive thought onto each negative one so like chemo is really risky thought and add but on balance it could keep me alive. Or I am terrified of being sick a lot and balance with there are loads of anti-sickness meds available which should stop most of that. Someone also said getting through the first one is the worst thing and I could see I might be like that though others who breezed more into chemo found second harder but again its probably taking it day by day and thinking each day is a day closer to getting my life back. It likely will never be back to how it was but it can be so much better than now. And I found planning trips away or taking a day out when you can really helps, just knowing you have something to look forward to.

Also ask people who are ahead of you, I feel less anxious when I know exactly what to expect and find the hospital whizz you in and out alone and I am always glad I asked before other people. I also find tell your team if you are really worried though sometimes they don't understand how worried and have to repeat many times but eventually you get help through it. Well done on getting through two chemos Sewing

I have just sent a list of my chemo worries to my team as I know at appointment I will just be in a complete panic and not be able to explain (it was very long! but find even having answers to some helps) and they are calling me tomorrow.

@Acinonyx2 Annoyingly I was exactly at the halfway point of 7 out the the 14 kadcylas when these liver levels raised. One can stay on it with liver issues if it's an MBC diagnosis as then it's more important to reduce the risk of known mets. I feel relieved to be off it too - I hadn't realised how much I dreaded the appointments even though I was managing fairly well.

@TwoBigNoisyBoys - how did the blood transfusions go?

Hugs to @Niknakpaddywhack. Have you thought about doing the Moving Forward course? It does help with the worries after treatment ends.

@Silkierabbit I am so glad you made it to Scotland for your weekend of fun and swimming. You are right about taking it day by day, hour by hour if needed. You will get there!

@Knittedfairies welcome to the thread. Having a good cry is probably good for you, I know when I indulge (rarely) I always feel cleansed afterwards like after a good rain shower. It probably is the wobbly hormone levels.
On the subject of topical oestrogen vaginally after breast cancer my yoga for BC ladies group discussed this recently. It is generally accepted that using topical oestrogens does not show any increase in recurrence rates but the research data is only on small numbers. As a result GPs and gynaecologists are nervous about prescribing and defer to oncologists. If the symptoms of sore vagina and urinary infections are severe and affecting quality of life then it is a reasonable informed decision to make to use topical hormone treatment. My friend is Stage 3 and well with NED and has decided to request treatment as her symptoms are making her miserable.
I am lucky that although I have atrophic vaginitis it doesn’t actually cause problems so I am steering clear for now. If it gets worse I would ask for Vagifem but I think I would have to jump through a lot of hoops to get it. I hope that helps (I am a retired GP)

Back from my London adventure I am mostly painting railings this week and doing a daily exercise class. It definitely helps the joint pains. I think possibly the turmeric is helping too but who knows?

Love to all.
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Hi @HauntedDishcloth, thank you for asking 😊 I was on the triage ward from 9-5 today…I had blood tests to make sure I still needed the transfusions, (which I did) then two big bags of blood, so I should be running marathons tomorrow! Ha! It all went fine thank you, had a catch up with another lovely lady who I haven’t seen for a couple of months, wifi h was absolutely lovely, met a new lady and had a great chat, oh and and had a nice broccoli soup, egg sandwich and cherry flapjack! Feeling fine so far, about a thousand times better than Friday/Saturday, anyway. Got to have more blood tests on Friday, to see if I need another transfusion next Monday, before the next chemo round the following Thursday. But today went fine, although it was a long day, but I’ve had a nice lazy evening and planning a long lie in tomorrow!

Hope everyone is well, sending love as always

Thank you all so much for taking the time to reply.

Congratulations @SewingBees on getting through your treatment and being cancer free, that is great news. I also have dense breast tissue and despite annual mammograms neither my IDC or DCIS ever showed up so I don’t feel that I can rely on them going forward.

So glad that you enjoyed your break @Silkierabbit - the photos are fab. I think a change of scenery is great therapy. Your exercise plan and ways to help your mindset are excellent ideas- balancing a negative with a positive and taking things a step at a time are definitely something that I think would help me too. It’s too easy to get in a downward spiral otherwise. Thank you.
Good luck with your results on the 28th- I hope that whatever they are that you can take the positives.

I’m sorry to hear that you had a long wait for a diagnosis @thesandwich but glad to hear that your treatment isn’t as bad as you expected it to be. I think you are right about sharing our worries- I keep it in as I don’t want anyone else to be worried but it means I’m on my own with it all and I think I need someone to get it off my chest(!) to.

Thank you for the hugs @TopOfTheCliff - much appreciated. I have surgery then possibly chemo and definitely radiotherapy still to do but will definitely look at the Moving Forward course as I can imagine that finishing treatment has as many worries as starting it.
You and @Silkierabbit have inspired me with all this talk of daily exercise - I know it makes me feel better when I do it however I have lacked motivation and energy as I also have long Covid, but that is improving and so I will make an effort to do more.

Thanks again for listening to my self absorbed essay and responding so kindly.

Thank you @thesandwich, @Silkierabbit and @TopOfTheCliff - very helpful.
I have another question: I'm thinking it may be very normal to think my new shape after a lumpectomy and breast reduction surgery feels very alien and not 'me' ? I was that shape for years so this feels all wrong.

Ah - didn't realise a new thread had been started!

Currently trundling in daily for lumbar vertebrae radiation and thankful its only for five days - three more to go! They put the tattoo so low beneath my three month old DIEP scar that I may as well not even have a little modesty paper drape over the lady bits. I was joking with the radiologists that from the treatment table it sounds like they are scurrying as fast as possible out of the radiation blast zone once Im lined up.

I get a week off hospital after this and then a week of breast radiation. That had better be it for a while as Im not sure what else they can cut or burn out of me at this point.

@MissSmiley well done - I know recovery is going to be tough, but take it a day at a time.

Evening all, I’ll read back properly shortly but seen my oncologist tonight and we’re still in the waiting game. It looks like the hole might be healing slightly but still early days. Radiotherapy will be discussed at my next appointment but without it my risk of recurrence is very high. Even going to have a mastectomy, I would still need radiotherapy due to the huge spread through my lymph nodes.

He’s going to speak to the Plastic Surgeon to try to get me an appointment more quickly privately but doesn’t think I will need surgical revision.

I have said I want to go back to work at the beginning of April because there is a project starting that is exactly my area of expertise and they want me to lead it. I wouldn’t have to travel for it or not much so we think I may be able to do radiotherapy at the same time.

@MrsPnut I hope you get some answers about your hole, you sound really keen to get back to work which is fantastic

Hi everyone I have read message but my my typing is still poor on this amount of pain relief. I have been feeling slightly better the last two days but I have a complication. Today’s update is that I’m having a CT scan to find out if the NJ tube is in the right place. It seems I’m suffering from delayed gastric emptying after Whipple. A common complication but one that means I still can't eat. Hopefully we’ll have some answers after the CT (or possibly x ray) later tonight x

Just thought I would add, I'm 9 days post op, I haven't eaten anything since Sunday 13 February