Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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@Silkieschickens before surgery you need a pre op assessment and also pcr test/ isolating etc so I can’t see how surgery could be the same day.
I was also recommended breast cancer now website. Easy to say, but try to keep busy. 🌺🌺

@silkieschickens I don't think they would be able to do surgery the day of your next appointment because they will need to talk through surgical options with you. You may sign a consent form that day if you are clear on your options and what you want.

My surgery was about 3 weeks after getting my biopsy results. It may have been sooner but I was sent for an MRI to try and clarify the size and shape of my lump, as the ultrasound and mammogram gave differing views.

If you're unclear on anything do please give your breast care nurse a call - they will have the answers and it will be less for you to worry about.

Thanks very much. Yes I think the next thing must be a meeting with the doctor, biopsy results, type of cancer and treatment plan and not surgery that day. I will just try and distract myself before then. Just looked at my notes and it says breast carcinoma.

DH was hey you will be eligible for the covid booster now, I think I would prefer not to be eligible if you need to get cancer to get it Useful to have people going through similar, have not told anyone in RL and not sure if we will do. Well will probably tell a few people but want to be careful as some people tell 1 person you have told 1,000, all told to keep it a secret.

@thereisonlyoneofme I just looked at this thread for the first time in ages, and wanted to talk to you about niraparib. I started on it, 200mg, in April, had to pause for two weeks when my bloods went haywire, but then restarted on 100mg, which was decided by the oncologist, who said in trials most of the women had had to halve the dosage and it was still effective. Since then bloods have been fine, and I've been incredibly lucky in that side effects were minimal and I don't even notice anything now.

So I completely understand your decision to stop, but if there is still an option to start again on 100mg, would you try it? I know and you know that it's not a cure, but would hopefully give more progression-free time.

As I'm here - waving and sending lots of love and good wishes to all my old friends here, and greetings and sympathy to those I haven't seen before. I'm 67, dg with ovarian carcinosarcoma in May 2019, debulking surgery followed by chemo. Lung metastasis in July last year, tumour removed, another line of chemo which ended in April, now on maintenance drug.

I probably won't come on the thread much as I'm trying to think and talk about cancer as little as possible, but it has been hugely helpful to me.

@Silkieschickens sorry to hear that your GP's concerns have come true. Thinking of you as you move forwards through treatment.

Thanks Pingu

Has anyone had pain in their ribs with it and also got pain in hip bone on same side? I asked them and they said unlikely to spread that way. I am late 40s so have peri menopause which brings random symptoms. I did have some bone pain about 5 years ago so hopefully unrelated but the ribs one definitely appears caused by breast. The lump is heavy though like a lump of metal in there and maybe just weight of it. Thanks, fine to say if was cancer spread, obviously prefer its not but whatever I have its best to get treated. Just trying to distract myself but this and a liver blood test being abnormal for one thing a few weeks ago is bugging me, tested when in with covid, hopefully just as not able to eat then and taking paracetemol.

Hi everyone. Looking for a bit of advice, although I suspect it's probably normal.
So was diagnosed with breast cancer recently and had a mastectomy at the beginning of the month. Feel surprisingly ok other than I'm totally exhausted and can't sleep. Haven't actually slept properly since I found the lump around mid-September. Due pathology results this coming week, I feel less anxious about everything since having surgery but the lack of sleep is so hard. Any ideas?? X

Hi @silky86 sorry you are going through this. I would suggest speaking to you gp and asking for something to help- i have been on amitriptyline for a while for other issues but can take it through this treatment.
Really works well for sleep. They may have other suggestions.v
Not sleeping is awful.

Greetings all. I’m having a duvet day today as I have been overdoing it with cycling gym boat repairs and gardening. My arm aches a lot but it isn’t swollen so I think it isn’t lymphoedema just tiredness.

@Silkieschickens sorry you have joined us on the BC trail. It is certainly a long one, I have been here for 17 months but I got the kitchen sink regime. The crucial information that will decide your treatment is the type of cancer you have. Next week they will tell you whether it is OEstrogen receptor positive and whether it is HER2 receptor positive. If it is then you are quite likely to go to oncology for chemotherapy before surgery, while if it negative they may offer surgery first. There may also be some CT or bone scans or MRI to check for secondaries before they decide on the plan. This is scary but information is power! The more they know about your condition the more accurately they can fight it. Not everybody needs these scans so don’t worry if you don’t have them. It’s a lot to take in so they will give you leaflets to take home. Things move very fast from now on. Keep posting here as it does help.

@silky86 whether your insomnia is due to anxiety or pain you might find two paracetamol at bedtime helps. I was on amitriptyline for a few weeks after surgery but it made me too dopey in the daytime so I just use paracetamol now. It’s like magic. Fingers crossed for results day.

@Bloodybridget nice to see you pop by. Sending best wishes and I hope you have escaped to Norfolk as often as you wish. I am still feeling a bit constrained by Covid which is raging down here in Devon.

That reminds me. My oncologist daughter is advertising a study that offers free Covid antibody tests for cancer patients. Apply on cancer survey.uk and they will send a testing kit. You can find out whether you are immune.

Regards to all.
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Oops it was www.Covidcancersurvey.uk

@silky86

Hi everyone. Looking for a bit of advice, although I suspect it's probably normal. So was diagnosed with breast cancer recently and had a mastectomy at the beginning of the month. Feel surprisingly ok other than I'm totally exhausted and can't sleep. Haven't actually slept properly since I found the lump around mid-September. Due pathology results this coming week, I feel less anxious about everything since having surgery but the lack of sleep is so hard. Any ideas?? X

I've been prescribed Mirtazapine for night sweats and they also help with insomnia too. I was diagnosed with breast cancer in June and had to stop taking my HRT immediately and since then my sleep has been terrible.

I was dubious about taking these as apparently they make you gain weight. They make you feel very hungry.They've sat in a drawer for about two weeks whilst I thought it through and decided whether to take them.

A lady on another thread said to take half the tablet, so for that past week that's what I've done, taken 7.5mg instead of the full 15mg. I've started to notice I am sleeping better and I haven't eaten more than I usually would. Night sweats aren't as bad either.

I don't know what will happen next week as I've got my third chemo on Tuesday so I'll have about 3-4 sleepless nights after that, don't expect to sleep much.

Thanks very much Top and so sorry you are going through this too and sorry to everyone else. It is useful to know what may happen. I am a person who likes to prepare for the worst, hope for the best so prefer to know everything. Just wish worst case was not so very bleak.

I am so terrified of chemo, surgery I can get my head around ok even if whole breast off, I am late 40s so my days of looking beautiful have past. Hair loss I will find tricky but think will manage as its only looks but so scared of it being stage 4 and the 10 million hospital visits, I have ocd and a phobia of hospitals and doctors though guess this is my exposure therapy and phobia of being sick.

I do know I am not immune to covid as just came out of hospital with it though hopefully immune for a while and luckily can stay home. The breast clinic was very covid secure, well apart from one woman patient with just a visor coughing like crazy saying its ok its not covid anymore just a chest infection and staff but she was at least well away from everyone. It felt much safer than covid A&E.

At least its a good hospital. I love Devon so nice. Went there this summer, with Isles of Scilly. Trying to distract myself. No sleeping tips as I havent slept well for about 2 years, I was a bit cross could not get hrt from doctors but just as well now. I try not to stress about it and just watch trash TV, or duolingo and MN. Though easier now I dont work much, I used to work and do kids etc and long commute until 2 years ago. The hospital where so happy I do not work much now, I am their ideal patient, lucky me.

Has anyone told an older (DS is 14, bright but austistic and since last lockdown has been mute but just starting to talk a bit) child with SN. DD is 16 and stalks me on MN and was questioning me on day I first put something on MN so I told her then and we have chatted. DH also knows and schools know. But DS I am emotionally stable enough to tell him now but I have no details and they have said could be any stage from 1 to 4, they said surgery is definite but everything else depends on type and stage. Obviously outcomes are quite different between those, it felt to me a large lump about 1.5 inches square so doubt will be stage 1, lots of skin changes but not sure if skin changes are same as cancer being stage 3 though even stage 3 to stage 4 is quite different.

Currently I think he does not suspect anything, I am concerned with his muteness though as he is autistic he generally does not care when people die and is puzzled when people do care. So he may not react much and be ok or he could be very upset and not communicate or he could ask lots of questions. I could hide it, could tell him now or could tell him when know stage and treatment plan. Surgery I could probably hide, chemo no way, radio if its daily he is likely to notice. I am veering towards tell when know all the details. But not sure that will be Friday as may be more tests. But guess it will be over next month or so. Thanks. He has always been so close to me up until 3rd lockdown when he got cross with me for expecting him to do work when Boris had kindly given him a long holiday as apparently Boris is nice like that. I saw MacMillan advice is to tell and with DD just telling her what is happening factually and that is ok though difficult as she asked can they guarantee wont be stage 4 and atm that is no but hopefully can do that soon.

@Silkieschickens mets-type pain is usually worse in the evening, may wake you up at night, and is relentless - painkillers will touch some of it but it will always be there underneath. If your pain spots aren't like that then it could instead be something degenerative like arthritis, etc. It could also be a function of how you may have been subconsciously holding yourself due to the lump - I noted to my dentist I was grinding/clenching my teeth at night - soon as I got a diagnosis and started treatment that stopped.

@silky86 It can take some time to overcome the fatigue caused by long periods of anesthesia, not to mention the surgery itself. You had major surgery two weeks ago so while the immediate pain may be diminished, your body is working overtime on healing. That being said, Ive noticed when I tip over into "overly fatigued" that I can't sleep and get almost manic with anxiety. Try the paracetemol trick and reduce activity a bit and see if that helps. I noticed that I had worse insomnia after doing a spin class so I lowered the amount of time I spent doing that and it did the trick.

@TopOfTheCliff Thanks for the link, I will sign up for this!

@Silkieschickens I didn't tell my children until I had the treatment plan details. That way there is something more practical to tell them. There were two booklets given to me by my breast cancer nurse for children - they were not ideal agewise but I gave them to my DC in case they wanted to look through them on their own. I know before Covid cancer units used to put on tours for children to help them process relatives' diagnoses - I don't expect they're back on but it might be worth asking if it would help in any way.

@TopOfTheCliff

Oops it was www.Covidcancersurvey.uk

Posted this ages ago — glad to see someone else has finally noticed it. Hopefully they’ll get more responses now.

@BloodyBridget Thanks for your reply, as I know you have taken a step back from the thread lately. I havent been able to get in touch with the Hospital so Ive taken matters into my own hands and gone down to 100mg for the past couple of days. Cant say I feel any different yet,still starving, yet sick at the same time! Im hoping things will ease off. Going to try and speak to someone tomorrow.
Hope things are stable with you.

HerbalRefreshment Thanks very much for your help. My pain does come and go, I did have a spine MRI a few years ago which I think showed some kind of arthritis so that is possible. It isn't that bad pain, more niggling and stops me lying on that side but doesn't need paracetamol. The rib one I am more concerned about as that does go from the breast lump area. It is hopefully just as it is a heavy lump and weight pulling down on ribs or just some random middle aged thing. The doctors did think it would be OK and they certainly weren't being fake positive about the breast lump, they were very direct though I asked to be told honestly.

Thanks HauntedDishcloth for the advice re kids. I think after all plan is done makes sense unless becomes obvious he knows something. He lives in a world of his own so should be OK for that. He hates change so would hate 1 diagnosis then a change, then a change so think end is best. He is normally best in little pieces which confused me but can start the little bits when I know everything.

My brain isn't functioning that well at the moment, took me a while to realise two posters with names starting with H weren't one person.

@Silkieschickens so sorry to hear your news, lots of messages since I last logged in. As other have already said there will be several preliminary appointments before you start any treatment/ have any procedures so next week will 'just' be another round of examinations, information, maybe scans, and a rough idea of the overall treatment plan which is based on the results of the biopsy and what type of cancer it is.

Telling your children, I asked the cancer nurse for advice and she gave me a couple of useful leaflets, one from Macmillan about telling in general, which covered all age groups and situations too, and a couple of really good pamphlets for younger ages explaining the science, by www.fruitflycollective.com
Personally I held off telling my teens (14 with anxiety and 17 with strong ASC traits but no diagnosis yet) until I had the first clear steps of treatment defined with dates. Up to that point I was able to explain away the multiple scan appointments as being part of the imaging trial (which they were, in a sort). As it turned out they were very matter of fact about the whole thing and I had worried about nothing, but that probably was a reflection of my own attitude. And be prepared for them to google - I was not doing it myself but of course could not really stop them. So mine found a good definition of the "stages" that we get told and that helped them.

@Silkieschickens sounds like we are going through something very similar. I'm 48, two kids 9 & 12. I had a mastectomy on 2nd Nov and I actually feel fine. I also had reconstruction at the same time and I think that's helped me feel ok about it. I wasn't going to tell the kids but I had to shield in advance of surgery plus I knew I would have a drain in post op which I knew I couldn't hide. We didn't use the C word but my daughter (12) guessed straight away. They took it fairly well, we also used the book that we were given (Mummy's lump) although it's aimed at much younger children. Their schools have also been great supporting them too.
Pathology results for me on Thursday but I'm the same as you - thinking worst case scenario, hoping for the best. Happy to chat.

Thanks very much Silky and Newly and sorry you are going through this too.

Hi, all, haven’t been on here for a bit. I’m feeling very shocked how inaccurate my MRI scan with contrast dye was - that scan think is meant to be the most accurate. What started out as a clear mammogram was 1.2cm on ultrasound. That became 2.5cm on MRI. In reality, after surgery, there were three completely separate tumours of 4.3cm, 3.5cm and 9mm. The MRI didn’t detect the biggest one at all or the smallest and got the size wrong on the one it spotted. I’m now facing a mastectomy and I’ve been told there is a very high risk that they will find more. There will be no chemo, but there may be radiotherapy now.

Sorry to hear that Daisypond and thinking of you.

Hope you radio appointment went ok Newly

Told schools, DSs school were lovely, brought things round, sent a so sorry email and said we will do whatever we can to help. Dds school put her in isolation today, so angry with them, keeping her home tomorrow as she said she took too many paracetemol in there today. Not massively too many but still, it was all because she forgot she had a 2 minute detention on Friday but she had 2 mocks and 1 speaking assessment and knew I was in hospital.

So sorry to hear the scans didn't work out for you @daisypond My cancer was only visible with contrast dye, not on the ultrasound or the normal mammogram. And what they thought was a 2.7cm mass turned out to be three separate smaller ones, which in my case was good news. The affected tissue was completely undistinguishable during the op and they decided to take a bit more in the second op to be sure of margins. Despite all the technology, it's obviously a super-accurate science and there are many different types of cancer, even in the category of 'breast cancer'

Thanks @Silkieschickens the radiotherapy setup appt was fine, they made sure I could lie down and reach up with my arms comfortably and then they recorded all the settings, plus I've got three little black tattoo dots now to help line up next time.

Good morning,
Can I join you over here please? I was diagnosed with breast cancer at the end of October.
Like @NewlyDiagnosed it didn't show up on mammograms or the 3D one, it was diagnosed with a biopsy.
The mri showed something on my breastbone, I've since had a ct and bone scan, I will get the results next week.
I am going out of my mind with worry and imagining the worst scenario constantly.
@Silkieschickens we spoke on my other thread, I'm sorry you've been diagnosed too. Like you I have a 16 year old dd, it's so difficult for all of us isn't it. Can't believe the school put her in isolation, appalling.
I told my daughter's school when I was diagnosed but I've heard nothing from them, she's struggling so I've emailed them again asking for support for her.
Hope we can support each other on here.