Cancer Support Thread #79 Newbies Welcome

[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

@MrsPnut I never thought the hair loss would affect me as much as it has. It is something I have really struggled with and I wear a scarf or turban 24 hours a day. For me it is an outward sign of 'illness' and I hate it.

@TopOfTheCliff you sound exhausted and in need of a good rest xxx

@Bloodybridget, @Lizdeflores, @Thymeout, @thereisonlyoneofme and any other ladies, may I ask are any of you on maintenance chemo for OC? I had a telephone appointment with my oncologist today and he said I am 'eligible' (what does that mean?) for maintenance chemo and the drug decision would depend on the BRCA results which haven't been received yet. He thinks it will be a tablet which has fewer side effects than the carbo/taxol infusions I am currently on.

@FizzyOrange I think your oncologist must be referring to the sort of oral chemo drug I'm about to start on, a PARP-inhibitor. If you are BRCA positive, you will be offered olaparib; because I'm negative, I'm getting niraparib. I could be wrong so don't take my word for it! Mine is capsules, two daily, 200mg altogether. I've been told the side effects are quite unpleasant for six weeks or more, but then my body should adapt to the drug and not notice them much.

@Bridget yes, I've remembered now, he said it would be a PARP inhibitor, thank you for that. For how long will you be on yours?

@FizzyOrange for as long as it works (i.e. unless/until I have a recurrence) and I can tolerate it. Niraparib was only licensed in the EU in 2017 so they don't have 5 year survival rates yet, but I was told that patients are doing very well on it.

Hi Fizzy I'm on Bevacizumab it was started on my last chemo and I have a 3 weekly infusion and I'm on it till Dec. I'm also BRCA neg although I'm still waiting for the blood test results. However they said that the tumour was negative so is only a very small chance that my blood would be positive.
The only side effect is stiffness which seems to be getting worse as time goes on. If I'm moving its okay but as soon as I sit down I struggle to get going again. It's not painful but my pride is taking a massive hit.
I do find yoga with Adrianne on YouTube helpful.

@TopOfTheCliff please don't feel bad lovely. A chat might just help. Hope you had a nice evening.

@sunflowerdaisies have everything crossed for you.

@MrsPnut I remember this stage and when my scalp got too sore that's when I got DD1 to cut the rest off. Hope your headache has gone.

Thank you all for your kind wishes. Just waiting for an op date. Dreading the drain part and the worms in it and not being able to have a bath for a couple of weeks.

Laters 👋

HC x

@FizzyOrange - I had a Borderline Ovarian Tumour 7 yrs ago. Now officially NOT cancer, tho' Ovacome and my local hospital don't seem to agree with the WHO on that. No chemo because it's too close to normal cells.

Now I have colon cancer, v luckily picked up on a monitoring scan for the BOT. So I have some experience of TAH and ov.ca as far as the path results. And hopefully not much more than a semi-colectomy and oral chemo for the colon cancer.NED in Nov. Monitoring scans coming up so fingers crossed.

Fizzy & Bridget I've been wondering why the onc started me on Bevacizumab and not a parp inhibitor . I think it might be because my oc started in the fallopian tubes obviously I need to check this with him and not Dr Google.

Fatigue and stiffness has it me like a ton of bricks, I've already had a nap today and I think I'll have another after lunch. First I have to roll off the sofa to get to the kitchen!

@Topofthecliff I was happy to see your news and you should certainly enjoy some 'me ' time this weekend guilt free, sounds like your taking on a lot.

It's forecast to be a lovely weekend so I hope that can bring some joy into people's lives x

Thank you for all the information ladies. @Liz I have the tiredness all the time time too, I have a nap most afternoons!

I think I might have just bought a car ! Not bought anything much for 2 years since diagnosis as didnt think it was worth it. Got a bee in my bonnet about a car that Ive always wanted but never bought through being boring and financially tight. Had to come away from the showroom to give myself a strong talking to. Might not get much use out of it, will have to put sensible head back on methinks!

Thanks folks for your positive messages. I talked to my wise friend today and I might get a bit of counselling. I am feeling conflicted about taking time for myself even though I know I need it. When I was really unwell and shielding there wasn’t any choice but now I am gettting better I am feeling pressure to do the dutiful daughter thing. How do we stop being people pleasers and taking care of everybody when we need care ourselves?
@thereisonlyoneofme I do hope you have bought that car. You must do all the things you have always wanted to do while you can! Life is not a rehearsal.
@HumphreysCorner I didn’t have any worms in my drain was that a typo? It won’t be as bad as you think honestly.

Hi everyone, can I just pop in and ask for some support/advice?

I'm 41, 3 children (2 with SN). I noticed a lump in my left breast - it's very near the surface, not mobile, next to my areola. I visited the GP and hrs referred me under the 2 week wait. He said it's about 1cm and irregular, although he said that he hopes it's nothing sinister.

I have been given an appointment on June 7th and they've told me I have to have a mammogram when I arrive, then I'll see the doctor.

I used to work in rapid access breast cancer clinic about 14 years ago, so I know that 80% of lumps are benign. But I also remember that regular and mobile were more likely to be cysts and irregular and immobile more likely to be cancer.

Does anyone have any advice on how likely this is to be cancer? I'm not worried as such, it is what it is, but I like to be prepared. Is it normal to send a woman for mammogram before seeing the doctor (where I used to work they tended to examine first, then decide what they wanted doing)? Is it a sign that they think it's likely to be cancerous, or is it more likely just their routine?

Does lump position indicate likelihood of malignancy/benign tumour?

Thanks and sorry for all the questions.

Oh, also, I've read about discharge from nipples but I've often had that from both breasts. I thought it was just left over breast milk from breastfeeding all those years ago?

@TopOfTheCliff not a typo, the nurse said there will be worms in it that's why they give you a bag to hide it. It's bizarre.

@Lougle hi, all I know is I had bleeding from 1 nipple and all the results came back as cysts in the milk duct. 10 months later I found a lump in the milk duct. But as you say, 80 % of lumps are harmless and I hope yours is too. 💐

@HumphreysCorner I am trying to think of what word sounds like worms. The bag is just there to hold the drain when you are walking around. The tubing maybe curls up like a worm? There is absolutely no chance you will have worms in the drain, just serum and maybe a few little blood clots.

@Lougle welcome to the thread nobody wants to join. It’s very friendly here. We can’t tell you whether your lump is benign or not. All we can do is hold your hand while you wait. Try to keep away from Google as it will frighten you. Stick to Breast Cancer Now or Macmillan or NHS choices if you must read up on it. Try to keep busy while you wait and if you are very anxious try a Calm App or similar. You will be seen and have thorough tests to help the team decide what is wrong. There may be a biopsy and you may have to wait for results. It’s the hardest part of the whole thing.
Hugs from Top

@Lougle Welcome to the friendliest thread on Mumsnet. I hope your time with us is short.

@HumphreysCorner definitely no worms in your drains, where does she think they come from? Like Top said, fluid and some blood.

I’ve seen somewhere else that a lady was told by her breast care nurse that she could only eat food prepared by her family and close friends. The lady wanted to go out for a meal and was agonising over it.

Thank you all for your kind welcome.

😂 DH questioned the worms too. The nurse must have said looks like worms and I've jumped on the worm word. 🤣

I had an interesting experience yesterday. I went for coffee with a close friend who has been one of my main supporters all the way through treatment. She goes on at length about my hair and how astonishing it is that it is growing out of my head. [confused ]
When I arrived I asked her please not to talk about my hair as it makes me embarrassed and uncomfortable. Three times she spontaneously started up again about it. How it looks like an expensive cut, how she loves the colour, how it frames my face so nicely.
Why could she not respect my request? It’s hardly so overwhelmingly lovely she couldn’t help herself. I guess she herself likes compliments so couldn’t believe I actually meant what I said. Sadly I shall cut down on contact if she doesn’t get the message.
Have a good days folks
Top

@TopOfTheCliff maybe it's that awkwardness of wanting to address the fact that you have had cancer and a huge amount of life changing treatment but wanting to do it in a "positive" way? It would annoy me too.

@TopOfTheCliff how odd and the fact she wouldn't back down. I called to see my Auntie and her housemate said you should be wearing a fancy hat. Er no, I never wear anything on my head so take me as I am.

@TopOfTheCliff That is really odd and I'd be reducing contact too.

I've been out for the first time with no hair, my hairdresser (and good friend) came and gave me no 1 all over last night. I wore a hat to go to the shop and chemist this morning but felt very self conscious. It was made worse by someone I know who is the biggest grief merchant and gossip going was in front of me in the queue. She asked how I was and I gave a breezy absolutely fine thanks before ignoring her.
When I left with my meds, she was telling someone who works at the chemist about her having chemotherapy. She's already at death's door with heart failure but there is no way I wanted to linger or ask her anything about it.

I feel like I look ill now, I've managed 7 months of looking like me and now I look like a convict with a patchy head.

Hi everywhere. Sending you all lots of love wherever you are in treatment or waiting for diagnosis

I'm here in the waiting room ready for my last round of EC. So worried about feeling horrendous like I did the last two times. And teary. And like this is so unfair that as soon as I feel well I have to make myself sick again. I always thought cancer would be the thing that made you poorly. But it's the treatment that does. After this is go to weekly paclitaxol and three weekly carboplatin. Anyone done this combo who can share experience?

I used to feel terribly self-conscious being seen with my beannie and never went bare-headed. Curiously, I now find I am not so bothered - and I think it's partly time and because I'm not actually feeling ill from treatment just now (just sore and itchy!). It's taken months though, to feel like that and I do still tend to avoid seeing people I know (rather than friends I actually see regularly). So I avoid the village shop for example and prefer to go near the hospital.

@TopOfTheCliff does this friend have a general problem with thinking before speaking perhaps - and now has 'don't talk about the war' syndrome?

I ordered a blue wig for fun. It's a nice colour but it looks ghastly on me so I've just sent it back

One of my pet hates is being told how well I look - it has the tone of 'if you're so seriously ill you really should look sicker than this - it's false advertising!'.