Cancer Support Thread #81 Newbies welcome

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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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MrsHedgehog Hope appointment goes as well as it can tomorrow and you get all clear. I am no expert on this, but I think tenderness is not a sign of cancer and no lump is good, hopefully its something benign like a simple cyst. I have a rock hard large lump which rarely hurts but I keep trying to persuade myself of innocent explanations for this, mine is also 1 side only which makes some of my innocent explanations like maybe I needed a better bra or ageing rather implausible. I thought mine will be a cyst as some cysts can be hard then I saw some types of cyst which are hard are cancerous. I am trying not to think too much about it I either am la-la-la it will be fine or planning after my death. And neither is especially useful, I find distraction and sleeping good. Hopefully by this time tomorrow you will have good news and all the worry will be over.

There sorry to hear about the meds, hopefully they can find a solution.

1teaandchocolate Sorry to hear that, I would be very encouraged by the word benign though always best to check the details but think that may mean it wont affect your life expectancy. The article I just looked at seemed reassuring though I know nothing about it. Hopefully just monitoring is all it needs.

Mrspnut hope surgery and mocks go well.

Thank you, sorry if my post was unclear. There is a lump, but it's also very tender.

By the weekend we'll both know either way.

Mine is a bit tender now but I think that is as I check it about 36 million times a day now. Hope we are both clear by the weekend.

@thereisonlyoneofme, your poor thing, that sounds thoroughly miserable. What dose are you on? I'm also on Niraparib 200mg a day which I take at 9am and for the first month was on 300mg a day. I'm hoping you managed to get through to the hospital and they'll be able to offer you something else. Xx

@thereisonlyoneofme that does sound rough. Is there anything they could give you as an appetite suppressant? I know I avoid stacking pills like this but right now I'm on added steroids and I am obsessed with food! I'm really counting the days (hopefully 10) to get off them - and I imagine this is mild compared to your experience.

I was all set to just say I was stopping Kadcyla but instead I'm on a 3 week break with steroids and then a reduced dose. After that, I can make one more dose reduction - can you reduce further?

Fizzy Acinonyx

Im on 200 mg Niraparib, there is some thought that 100mg still does the job, but Im sceptical. Surely if 100mg was enough, that would be the recommended dose considering how dreadfully expensive the drug is.

@thereisonlyoneofme the dosages are approved according to whatever trials were done - there's often very little data on just what an effective dose is (imagine trying to test that, ethically!) and it seems to me they tend to err on the generous side. I would definitely consider it.

I had my appointment and had a mammogram (my first as last time I went was 2013 and I was too young - ouch) and an ultrasound and they concluded that I have several cysts, but nothing sinister thank goodness.

Thank you for holding my hand through the wait. Wishing luck to everyone still waiting on appointments, and thinking of everyone, especially those going through tough times right now.

Glad to hear you got the all clear MrsHodgeheg

@thereisonlyoneofme I'm on a Facebook group for PARPs and many of the ladies on there take 100mg. Appetite suppressants are a good idea if they will prescribe them. I hope you can get some help soon, it sounds miserable. Could your CNS help at all?

@mrshodgeheg what lovely news!

Hi everyone. I'm a week into my first (of three) docetaxel chemo sessions and struggling with some lingering side effects so I thought I'd ask for some advice.

I had terrible hot flushes (now passing thank goodness) which caused itchy skin in places. Where I scratched, even gently, the skin has reacted. It has come up in a nasty rash in a few places, particularly bad around the sides of my neck. I'm using a calamine and zinc oxide cream to ease the itch but the rash isn't getting any better. Has anyone else experienced this? Any advice? Do I just have to wait until my body recovers enough to be able to fight this itself?

@SewingBees I didn't have that particular issue but I did find Clarityn antihistamine tablets helped with some of these inflammatory issues generally. I looked into different kinds of antihistamines and chose this one as it has a good profile regarding cancer prognosis.

@Acinonyx2 thank you, I have antihistamines in the house so I'll try those.

Out of interest where do you find all the information about which drugs are best?

@mrshodgeheg great news, so glad to hear that! Enjoy your weekend!

@Silkieschickens good luck for tomorrow.

My treatment is progressing, I've got my initial appointment for the radiotherapy tomorrow afternoon. I'm glad there was time for me to receive some explanatory documentation through the post to explain what to expect, there is a lot to take in! Again.

And at the same time I received a call from my SIL who's just been recalled after her first routine mammogram and has been diagnosed by the radiographer with early stage BC, she's going to get her biopsy results and treatment plan on Monday. I wish I could be there with her.

@Silkieschickens thinking of you today

@mrshodgeheg great news.

@Silkieschickens Good luck for today

@SewingBees I used antihistamines and steroids for my itchiness post doc.

@NewlyDiagnosed My thoughts are with your SIL and good luck with your radiotherapy.

Thank you all. Unfortunately it is cancer, go back in 7 days for treatment plan and biopsy results, meet with surgeon and nurse. Seemed very certain its cancer. Home now. Bit shell shocked but at least being seen very fast.

@Silkieschickens I’m sorry to hear that. It’s quite usual to have quite a quick turnaround from the first appointment to getting results and then there is a lag to actually starting treatment.

Thanks MrsPnut They implied they would be starting treatment very fast as well but will see on Friday, I may have misunderstood a bit as I was a bit in shock but they said something like just because I was seeing a surgeon and a nurse on Friday it didnt mean they definitely would rush me into surgery then. They said sometimes they do chemo or radio first I think but no real delays. I would imagine its just a doctors appointment, they said will get biopsy result, treatment plan, type of cancer, maybe grading. Not totally sure but definitely cancer, they said they thought probably not in lymph modes but there are quite a lot of skin changes and a fair size lump. They gave me phone numbers but think they dont know treatment plan until they have looked more and biopsies.

The doctor who examined me pre checks seemed to already know, came in and he said may just examine you and go home. Then he looked and they started talking about biopsies and a treatment plan though said hopefully not needed but sadly tests showed otherwise.

@silkieschickens There are a few of us on this thread, myself included, who are a little down the path you're now treading. I was where you are in June.

Your treatment plan will depend on your biopsy results as breast cancer treatment is very much tailored to the type of cancer you have. Feel free to ask as much as you need at this stage. And the general recommendation is to stay away from Google if you can, although I found trusted sites like cancer research and Macmillan to be useful and very informative at that stage.

Sorry to hear your news@Silkieschickens. I went through the same end of July. Now recovering from surgery, all going well. The uncertainty is the hardest.
There is so much to take in- please don’t hesitate to contact your breast cancer nurse or local support group.
There may be further scans etc too once biopsy results are in before treatment. 🌺🌺🌺

S*ilkieschickens
*
I too know exactly how you're feeling. I was diagnosed with breast cancer in June. Lumpectomy in August and having my third chemo next Tuesday.

I've found the forums on Breast Cancer Now and Macmillan a wealth of information and support. I've not gone near Google.

It's a lot to take in and digest. Once you know your plan you will feel more at ease, they waiting for results and appointments is the worst.

@Silkieschickens I'm so sorry. I was really hoping your GP was wrong.

Thanks very much. Was hoping gp would be wrong too though at least was warned. I just wish had spoken to that doctor in June not the other one who said it would be nothing. Having said that it was almost certainly cancer in June as similar symptoms and nothing can do about the past.

They said to stay away from google and that is fine as I see them in 7 days and without type and stage can not tell that much. They have said definitely cancer and definitely surgery but said could be any stage from 1 to 4. It is a fairly big lump and a lot of skin changes but they said they think not in lymph modes which they said is normal route for spreading around body. But will just have to wait and deal with whatever they say.

I asked if they would do an mri and they said it varies depending on what they see, may or may not be further tests before treatment. They gave me their phone numbers though not much I can ask atm. The only thing that confused me was the next appointment saying it did not mean I would definitely have surgery that day so was left wondering could I have surgery that day but think it will just be a meeting and plan.