Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

Grade is to do with the histology and reflects how aggressive the tumour is. Grade 1 is mild and Grade 3 is more invasive.
Stage reflects how far the disease has spread so Stage 1 is contained with no spread. Stage 2 is local node only stage 3 is multiple nodes and Stage 4 is distant spread.
The reason for defining these is it affects the prognosis so treatment will be more aggressive for the higher Grades and Stages.
This is why some people don’t need radiotherapy or chemotherapy and others do.

Hi everyone, newbie here.

Was diagnosed with BC yesterday. Had two biopsies, one node and the actual lump. Next appointment is 23 Feb and will tell me what type I’ve got and what the treatment plan will be.

Consultant said I can have removal of the lump (3.5cm) with a breast reduction at the same time as I am quite well endowed!

I’m 45, have kids 6 & 9 and live with my partner.

I have the option of having private treatment when the histology is confirmed but don’t know what to do.

Does anyone have any thoughts?

Thanks

I’m sorry to hear that- are you still in the shock & disbelief phase? As far as treatment goes, I think the NHS is hard to beat, and I can’t see that going private will offer much extra, but I’m sure others will chip in on that. How do you feel? How’s your partner taken it?

Ah that's good about the HER2 noidea. Mine is also negative.

Welcome, Aboutime. You most be feeling quite shocked and upset but everyone here is so lovely and supportive. I am having NHS treatment for breast cancer and it has been mostly brilliant so far. Do you have any plans for how to tackle the subject with your children?

V interesting to hear that so many others have not been given a stage. I have tried to work mine out from the online info but I can't tell the difference between the description of stage 2 and stage 3 on the Cancer Research site. Mine had spread to my sentinel node, which seems to be covered by both stages! I am getting a bit obsessed with it all again, so maybe I just need to forget about it for a bit and not worry.

AlbertCampion - I share your vaccine woes! Ended up admitted to the Christie after my vaccination on Thursday, with a temperature of 39.8 and blood pressure of 188/106! Back home now, but still feel rubbish - particularly when the next paracetamol is due, as my temp starts to go back up. They told me loads of their cancer patients have had similar reactions! I thought I'd be ok as I've finished treatment and my last herceptin was 8th Jan. They've said it's fine to have the 2nd one, but that I'll probably have a similar reaction. At least they checked me over and were able to determine it was a reaction to the vaccine, and not anything sinister. Got to stay in the new ward (yay!) it was very swanky! I had the oxford/AstraZeneca vaccine).

NoIdea I had my chemo at the Christie and all of the staff are incredible. They do everything they possibly can to look after you during treatment.

Hope everyone is having a reasonable weekend!

Oh no Zorgo I'm so sorry you've had a similar reaction! I do think the possibility of this needs to be communicated better to cancer patients. Glad to hear you are on the mend - hope you're taking it easy.

Hey @AlbertCampion, are you still around? I'm going to PM you about the staging stuff, but I wanted to make sure that's okay first?

Hello Bit! Yes, pls do pm me! x

Welcome and sympathy to @Abouttime - lots of lovely women here with breast cancer. It might seem like a long wait till your next appointment, so I hope you can find distractions.

I'm in a bit of a tailspin about Covid vaccination now, with @Zorgothslugofdoom reporting a bad reaction to the AZ one too - hope you are feeling OK now Zorgoth. I was planning to just make an appointment via my GP, for a few days before next chemo; then the practice actually phoned me two days ago to say a doctor could come to my house to do it if I wanted, which is pretty impressive. But I guess there would be no option to have the Pfizer one in that case. I really want to talk it through with someone very knowledgeable, I suspect most doctors and HCPs would just say it's safe to have either of them. What would people here do, talk to someone at GP practice about it, or try a CNS?

I had my vaccine on Friday and had to have AZ after my reaction to chemo. My oncologist expressly told me not to have Pfizer.

My eldest daughter had AZ two weeks ago and was really ill afterwards for about 5 days so was a little scared of having it.

I turned up to the surgery on Friday and they were using Pfizer but had some AZ in the fridge they could use for me, got jabbed and walked home past everyone having to sit in the waiting room for their 15 minutes.

I was quite ill yesterday with a high temperature, I had two lots of paracetamol and slept for most of the day but I feel absolutely fine today.

The difference between DD1 and I, apart from many years is I take a high strength vitamin D supplement. There is quite a lot of evidence of the effects of vitamin D on lessening symptoms of covid.

@Abouttime Welcome and sorry you find yourself here.

Thanks @MrsPnut, sorry to hear you were poorly too. Did your oncologist say why you shouldn't have the Pfizer vaccination?

Because of my allergic reaction to Cisplatin during the last two chemo sessions, she thought there may be increased risk from the Pfizer vaccine of another allergic reaction.

I had the AZ yesterday and decided not to mention my reaction to chemo docataxel as my consultant told me to go ahead. It was fine not even a sore arm so far.
Fingers crossed

@Bloodybridget

Do you have a 24hr Chemo line phone-number? I rang the Guy's and St Thomas' one when I was having a funny turn and spoke to a nurse who seemed to know a lot more than some of the doctors.

I doubt if anyone is an authority yet because they haven't got enough data across patients on different chemo regimes. I had the Pfizer with no side-effects whatsoever, not even a sore arm.

I think your priority should be getting it done asap. I keep hearing of people who've caught covid without leaving the house.

I had the Pfizer jab a week after my last chemo (weekly paclitaxel) - slightly sore arm but no other issues at all. I got the ok from the chemo team, they gave same advice as for the flu jab, that I should have it as late in each cycle as possible. Given i'd actually finished chemo I would have waited a bit longer but I also wanted to have it before my surgery with a bit of time to be effective. Fingers crossed. I was very relieved not to get a temperature after my mystery high temp and hospitalisation back in November!

Ah thanks for feedback. @MrsPnut I haven't had any allergic reactions to chemo drugs, so maybe I'll be fine. @Thymeout yes I do have the chemo hotline number, I think I'll try the CNS number first and if they don't call back I'll use the hotline (I tend to think of that as emergency only!). @TopOfTheCliff and @Lubballoo glad you are done!

@Abouttime I meant to reply to your point about going private earlier.

I've used my BUPA coverage to go private for my treatment, partly because I have two cancers and partly because I didn't like the Macmillan nurse on the gynae oncology team.

I like that I chose the centre and then the oncologist. The centre I use has chemotherapy and radiotherapy in the same building so if you need something then it is easy to speak to the nurses and radiologists.

I have direct access to my consultant's secretary, I don't have any difficulty if I need to ask something and she answers emails quickly during office hours. I also have a couple of contact numbers for out of hours. The centre also arranged a taxi to transport me to and from radiotherapy because of having to attend every day but unfortunately they don't do this for chemo (I had both at the same time for my vaginal cancer).

If I had only had breast cancer then I would have used the NHS, I liked the people I'd dealt with and think it would have been a good plan of treatment.

I'd speak to your private provider and see what they can offer, mine has a specialist cancer team and I have a dedicated person to deal with which helps because if you go private and are not self funding then it is your responsibility to make sure that every little part of treatment has been authorised in advance.

I do have a spreadsheet and for each piece of treatment we decide upon, I list the pre authorisation number against it so I can keep track.

The new anti-sickness drugs did not work on my 2nd chemo last Thu so just emerging from the fug of that. Laying wan in the bed I had the distinct vibe of a poisoned russian spy...

@Abouttime, I used private cover from DP's work to speed up the initial investigation of BC by a week then continued it as I had a notion I was freeing up an NHS space. However, I've had all my scans & chemo at my local NHS hospital. I will have radiotherapy there too if needed but my op in a private hospital. I don't know if I've been bumped up on any waiting lists - it's all been very quick since the xmas/new year break. The other thing available under our cover was to have chemo administered at home but I haven't wanted to do that as yet.

A weak wave to all. It was good to catch up on the thread when scrolling on the phone wasn't making me feel even sicker!

Just thought I'd let everyone know I'm fine now - temp is normal and I don't even have a sore arm. Going to phone gp tomorrow to report side effects, but the team at Christie's said I can have the 2nd jab - but will probably react again. Worth it in the long run, but a pretty grim couple of days!

Here's hoping for a good week for everyone.

Thanks everyone - not sure how to do bold yet!

Our insurance appears to be brilliant - partner works for an American Co.
BUPA will even pay me if I decide to go the NHS route! They will pay me for every chemo/radiotherapy session and night in a NHS hospital.

I was thinking that I would have the operation in a private hospital as I’d be guaranteed a private room.

We are supposed to be moving house end of Feb which will make the private hospital closer to us.

I’m hesitant because the NHS consultant who diagnosed me, really pushed for me to stay but I also think they could use the resources to treat me, to treat someone else.

It’s so difficult.

Can I ask if there is a ‘better’ type to be diagnosed with? I’m waiting for the biopsy results which will determine if I have to have chemo first or the operation first.

When I have chemo, am I likely to be too ill to drive? We are moving to a different area but have to keep the kids in their current school as one is SEN and won’t be able to tolerate a change of school. It’s a 40 min journey 😔

@HauntedDishcloth also just emerging from post-chemo poisoning - let's exchange virtual hugs. Change of drugs to EC at first hoping it would be maybe better but no - nausea etc pretty crushing. Well, just 2 more to go. But I get thoroughly miserable when I feel ill - no resilience at all. Dh tries to cheer me by talking about post chemo but that doesn't help because I'm so afraid of surgery.

I'll brighten up over the week. I just avoid contact with people while I'm at my most pathetic.

@Bloodybridget I've contacted a therapist to see about some sessions - are yours still proving useful? Staging is out favour but hard not to think about it while it's still around and I do get down about it sometimes even though I know it's becoming a lot less meaningful these days - it's really just a relic of old systems.

MRI tomorrow but no answer on when I'll get the results. I do feel that contact/communication with the hospital is minimal I don't feel like I'm really on the radar. We used to have private insurance and I would be tempted to make use of it for the potential increased contact and communication. I feel a bit lost in space these days and can't expect different due to the circumstances. My oncologist in particular, is especially remote and elusive.

@MrsPnut Hope you get something sorted out that sounds beyond my own endurance capacity - you do seem pretty strong (hope I'm OK saying that!) but it sometimes seems that as long as we are getting treatment we are expected to just endure any amount of suffering that comes with it - and they should be clear that that isn't realistic.

@Abouttime best wait for your biopsy results - there are pros and cons to the various outcomes. Some people get few side effects from chemo and even work FT all the way through. You will notice that some of us here have been quite sick though and personally I have a few days where I can't leave the house at all. It's pretty unpredictable and varies a lot - you have to see how it goes. If you need chemo (do you definitely know that you will need it?) I suggest you have a plan B just in case - even if it means the odd day off school. So don't assume you will be too ill - but be prepared just in case.

DH had 2 major surgeries back in the days of private health care and we got paid as he had them on the NHS.

Morning all

Still in the icky few days after cycle 2 day one even though I've doubled up on the sickness meds.

@Abouttime a big warm welcome, this was me in December waiting for my biopsy results. It all depends on the results and it was recommended I have 12 lots of chemo to shrink my lump which would made the operation less invasive. Then I am having radiotherapy. I can't work as I'm a nursery teacher and my immune system won't cope with the children's illnesses but being honest I couldn't go anyway as the chemo drains me. Getting nothing done at home. Shouldn't be long for your results now. The NHS has been brilliant and efficient and very supportive. Hubby takes me to and from chemo but I possibly could drive on the 2 good weekly ones.

@MrsPnut kudos to you, you are doing amazing, can't imagine the pain.

@HauntedDishcloth bless you, I feel your icky ness. DH just keeps saying you will get through this.

Bit of snow that was here first thing is gone. Rubbish.

Big wave 👋 to everyone else.

HCx

Just popping in to say hello. Most of you won't know me but I was a regular on here until last summer.
@Bloodybridget I'm pleased to hear you are emerging from the latest round of treatment.
@BitOfFun Love your picture. It's actually lovely to put a face to the name. How thoughtless of the CNS to tell you half a story.

@Abouttime I am sorry about your diagnosis. You will soon learn that there are many, many different types of breast cancer and the treatments and outcomes vary enormously. It does seem to be particularly well funded in the NHS compared with other cancers and there is long term support. However it depends where you live. In London near a major cancer centre - outstanding. Where I live with no surgery or oncology at the local hospital - not so great. The appeal of private to me would be the privacy at surgery. Having said that there were only two to a room at the hospital where I had my operation.
Can you work through chemo. Some do, I couldn't have. Some chemo is 3 weekly and others are weekly. Can I ask if there is a ‘better’ type to be diagnosed with? There are more treatment options available for some variations. If it's ER+ it means it's hormone driven and you would have access to drugs that treat that. If it's HER2+ there are other drugs that target that.

Staging. I was never given a stage just a grade. When I asked the onc said they don't do stages for breast cancer. I did, however, google the fine print of the post surgery pathology from the letter to my GP.

I have an tel appointment with my oncologist next week. I thought he would discharge me last year after they cut short my treatment due to covid ( stopped my herceptin). Not sure what if anything I should be asking him at the appointment. Anyone any thoughts on it?

Sending much sympathy to @HauntedDishcloth, @Acinonyx2 and @HumphreysCorner as you cope with nausea. What a bugger it is. Acinonyx, sorry you are feeling lost and abandoned. I am glad to be having a weekly session with the therapist - I sometimes wonder what we'll find to talk about, if I'm feeling well and cheerful, but there's always something that comes up!

@Skap how nice to hear from you! Hope life is treating you ok. I guess your consultant is checking that you haven't got any warning signs?

CNS just phoned after I'd left a message, she was pretty vague. I could get the Pfizer vaccine if I went to the hospital, but I think I'll just get the GP to come here.

I've been mesmerised all day by the snow.