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

@backformore good luck for surgery. I think you need to really trust your surgeon and this is obviously the correct choice for you. We all need are treatment tailored exactly to us. It's not a one size fits all process.

My treatment has indeed been whistle stop. 3 months to the day from diagnosis to end of treatment. I've been lucky. I am determined to continue being lucky.

Thanks, Mrs Pnut and BadEyeBri!

@Acinonyx2 I'm triple positive, stage 2. 4cm lump and a couple of nodes affected at diagnosis. 6 rounds of chemo (FEC-D) have reduced it to 6mm and apparently clear MRI. Doing Herceptin every three weeks until next year; also had Perjeta. Tamoxifen and radiation still to come.

I'm reassured about the wire being weird but not bad. More scared of the tracer dye shot (which you wouldn't have had with a clearance) but I guess it will be over fairly quickly.

Did they ever recommend mastectomy for you? It's been raised as a possibility for me if this other "dot" is found to be diseased. No one has mentioned more chemo but I suppose that could always be on the cards... :(

@backformore surgeon always recommended a lumpectomy so it would only depend on clear margins, which I had thankfully. I did also have a reduction mammoplasty across both breasts at the same time (like Mrs Pnut).

I'm Her+ but hormone neg so no Tamoxifen. After radiotherapy I'll have 14 x 3 week cycles of Trastuzumab emtansine TDM1 - or Kadcyla). This drug was being used for metastatic Her+ but last June was approved for those with residual Her+ after treatment (so at high risk of mets). It's a targetted chemo - the cytotoxic agent is attached to Herceptin so side effects should be milder.

I'm just over two weeks behind you @backformore, but with mastectomy followed by rads when healed then eventual reconstruction with the tummy flap & probably Kadcyla. I'm ER/PR+, HER2+ with more than 2 sites and a blob of pre-cancer. The aggregate size before chemo was just over 5cm which is the size above which they prefer to do mastectomy rather than lumpectomy, as I understand it. There has been quite a lot of shrinkage due to chemo but not complete. No node involvement apparent on scans but having sentinel nodes taken out during the mastectomy for biopsy.

No one's said anything to me about a wire - is that only if several nodes are being removed?

I'm not that worried about the op, more so the scar management afterwards and the psychological shock of having no boob on one side. My approach is that it's natural to be upset by that and that it's a good thing to reduce the risk of recurrence/spread as much as possible. I was given the name of a counsellor if I needed one at my very first appointment after diagnosis. Funnily enough it was the same counsellor I had for EMDR and she is a trauma specialist, so I think it's accepted that having cancer can give you PTSD or similar effects.

@NogbagTheBag - my eldest DD was texting at 10:30 the day of my first chemo. They hadn’t even started by then. I think they thought I was going to walk in bright green, no hair and half dead! I’m on week 4 today and they are perfectly comfortable with it now.

@feelinggeriatric - Hi. My DM has lived for 20 years with the fear of secondaries. She was also told what your Macmillan nurse said about hips. Hers was arthritis and a small hernia. I understand your concern though.

@ToastCosILoveIt - hello and welcome back

@BadEyeBri - how brilliant to have finished treatment. I am counting the weeks down

@Starface - hello and welcome

@backformore - good luck for surgery. I’m pleased you got the second opinion and the right plan for you.

@Acinonyx2 - well done on the work. Mine is going very slow! I’ve already been told I will have kadcyla after surgery.

First meeting with the surgeon is 13th July with another MRI before. I haven’t asked to see the results of my first one though as he’d pretty much told me the extent from the 3D mammogram. He has already said I will need a double mastectomy. I do worry about lymphedema. DM has struggled with it over the years.

Hats off to those dieting. I have developed a fondness for cake and ice cream. Not my usual diet!

Going to pick up my wig tomorrow. DH upset at shaving all my hear off. I’m not overly bothered and the girls fine but I am avoiding looking at myself.

DF in his final days. The vicar came and said prayers and a short service at his bedside last night with us all there. He was staunch CofE. Even though I’m not religious it was beautifully done and very comforting. He seems comfortable, calm and at peace and for that I am grateful.

I have an appointment with a different psychologist next Monday. She will have her work cut out if I let her!

@HauntedDishcloth Interesting - similar stuff we're going through!

The wires are to help the surgeon locate the tumour (or what remains of it) during surgery, if it can't be obviously felt...

@JeanLannes so sorry to hear about your DF. I hope he finds peace x

@JeanLannes I'm very sad to hear about your DF and am thinking of you and your family

@JeanLannes thank you that is reassuring.

I'm so sorry about your DF.

@HauntedDishcloth having no breast on one side will be a shock but tbh I've had a lopsided crappy implant for 12 years and now really comfortable with the idea of not having anything that side. But I had the intermediary bit of having the implant (which was ok to start with) so I've had time to transition in my head. Everyone is different but I do think these things become acceptable over time. When I'm wearing something tighter fitting I wear an m&s mastectomy bra with foam inserts and you would never know. I have tiny boobs tho which does make that easier .

Weirdly I'm more concerned with my fungus toenail which has prevented me wearing lovely sandals for the last few years!!

@Acinonyx2 I had same diagnosis as you. Hormone negative and her2+ . Was a while ago so had herceptin but happy to hear the science is still developing so well.

Morning all

Sorry I've been awol but had a bad 3 weeks then my last EC yesterday and feel so sick. Have all the meds but I think it's a build up of it. Went to bed at 5-15 yesterday.

My stupid PICC didn't work again so had a cannula and have to go in this morning for them to try and unblock it. Why they can't take it out now I've finished my chemo I really don't know. Also have an MRI at 11am.

Will catch up with news.

HC x

Awh HC that sounds tough. Hope your meds kick in soon and you reach the other side of the chemo tunnel. It's just shitty for you that everything has ganged up on you at once.
Fingers crossed for MRI

Hello everyone. I hope you don't mind me shuffling in. I am newly diagnosed with breast cancer. They don't think it is in the nodes. Can the scans be wrong about that?
I'm due to have a lumpectomy and node biopsy really soon and I'm absolutely terrified. I just feel like I know it's going to go wrong. I know that's stupid and unhelpful. I actually keep day dreaming about cancelling the whole thing and just carrying on with my life as if none of this nightmare has happened. Reading your posts and experiences is giving me strength though. It seems a lovely thread so I hope you don't mind if I stick around a wee bit.

Im back on chemo tomorrow for another two doses of carbo/caelyx
for after op mopping up. Wondering if it will affect me more as insides still healing, found it fairly easy regime for first 6 cycles.
My ruddy hair is still coming out though 5 months after I finished the 6 , told it would thin, its more than thinning !

Off out for a first pub lunch with my friends for nearly a year today
hope I can get into some decent clothes, as slobbed about in old stuff for months !

@Littlestelephant it's so easy to feel like that isn't it? I'm a great one for ignoring stuff in the hope that it'll just go away.
Take it easy on yourself. Give yourself time to worry and cry and be angry at the unfairness. But do see your doctors and have your treatment. As patients our job is to turn up and to get through the treatment. It's a terribly passive state. There's a tiny amount of it that you can control which I found really difficult.

I'm not a BC patient but the lovely BC ladies will most likely drop in soon and give you more accurate advice.
Hugs and from me. Go easy on yourself, it's a tough ride x

@JeanLannes Sorry to hear about your DF, I hope he is comfortable and at peace.
@HumphreysCorner That sounds rubbish, you’ve really been through it with the bloody PICC. I hope you feel better soon.
@Littlestelephant Welcome to the club no one wants to join. We’ll hold your hand and answer your questions.
@thereisonlyoneofme Good luck for your chemo and definitely enjoy your pub lunch.

I’m at my GP’s for a blood test before my MRI scan next week. Trying to get the receptionist to understand that no I did not have a blood form and I knew what test I needed and why I need it was tricky. I’ve left a note for the practice manager to point out that being ill is hard enough.

I'm really bloody fed up today.
Meant to be starting my 5 day inpatient chemo today. Got sent for a covid test at a random place 40 mins drive away on Sunday to allow me to be admitted - arranged my whole day around it which meant taking the kids and the dog along for the ride. Got told to self isolate from that point before admission.

Yesterday they rang me to say they had a bed but that my covid test had gone missing so they couldn't admit me. Asked me to come in at 9am for another rapid test and to bring bags as they were planning to admit me this morning once they'd discharged someone and I had a test result.

Broke my neck getting there for 9 this morning after school run, had yet another swab shoved so far up my nostril it felt like it was scrapping my brain. Cried a bit. Waited for an hour then went to the ward to see if they'd let me leave my bag so I could go and wait for my test result in the Macmillan centre a short walk away instead. Was told oh they don't have a bed for me, it's all changed, go home and wait for a call. Which means I won't get admitted til late, won't start chemo today, at least one extra night in hospital as a result, won't be out til Monday earliest etc etc.

Last time I waited round all day for a call and then they rang just as I was dishing up the kid's tea and said 'can you be here in 20 minutes?' I live 30 mins drive from the hospital.

I burst into tears in the corridor and sobbed for about an hour and a half. DH had to spend a second hour of his day driving back and forth to the hospital. I am fucking done with this shit. I am so dreading another stint and had just managed to steel myself for it and being sent home to wait is the straw that has broken the camel's back today.

@Babamamananarama Oh that is rubbish, if you can muster the energy then do complain, there is no excuse for them messing you around.

@thereisonlyoneofme enjoy your lunch. Can't wait to meet my friend for one when the sickness is over. Good luck for your chemo.

@Babamamananarama what an absolute nightmare, badly let down. Hope things improve. My DH moans about taking me and will be glad when it's over.

@MrsPnut thank you 😊 They finally managed to get my PICC to work only to find the MRI people can't use them so had a cannula. After the scan and cannula removal I was just getting dressed when I heard my dressing pop and then there was a blood bath. Wrapped a gown round it and had to bang on the door as it was locked but thankfully they heard me. Did my best to clean it up while feeling sick 🤢 My GP isn't responding to my messages, not good. Hope you get sorted.

A big welcome to newbies. You can chat as much or as little as you want on hear. The group is lovely.

@Littlestelephant I'm 6 months post diagnosis and finished my chemo yesterday. Looking at an operation next followed by radiation. The scans are very accurate and please carry on as once you have a treatment plan the time does seem to fly. How old are you and what family/pets do you have?

Have taken some more meds and hoping to try and eat a baked potato.

Big wave 👋 to everyone else.

HC x

Hi @HumphreysCorner I am early 30s and have 2 young kids. And a DP who is supposed to be my DH but Covid got in the way. I know I have to go ahead with the surgery for them.

@Babamamananarama that's so shit. Totally and utterly rubbish I'm sorry.

Hello @Littlestelephant I have a BC diagnosis. Mine is in the nodes although hopefully on its way out thanks to the treatment. Im not sure what the full surgery implication is for me yet but I'll be having the whole boob off at least. I have a six year old son and I'm 41 with two dogs.

My doctor just rang and I cried at her. Today has been emotionally rough. Got parents evening via zoom at the moment so need to perk up for that

@JeanLannes so sorry to hear about your DF but how lovely to be at home surrounded by love and prayer. I wish my DF had been able to have the same instead of an undignified attempt at CPR on the landing with DM watching.
@HumphreysCorner hooray for finishing Chemo! It’s like a horrid Cancer triathlon isn’t it? Nothing ahead of you is as bad as what you already been through.
@Babamamananarama I feel for you it’s so upsetting when you have moved mountains to fit in with the hospital’s plan and they just whimsically change it. I would have cried too.
@thereisonlyoneofme I hope you had a lovely lunch.

I had an epic day. It started with the not so good trip to the bowel clinic to check out the incidental finding in my rectum on the CT scan last September. Thankfully the kind surgeon couldn’t find anything wrong but decided on a just in case colonoscopy some time soon. Bah!
Then we went sailing!! First time in nearly a year and first time out in my new boat I bought myself in the middle of chemotherapy. It was magical being out on the water in the fresh air and sunshine. My legs worked and my arms were strong enough so all the physio and hard work is paying off. We didn’t stay out long and there is a Gale coming through tomorrow but it was just a glimpse of normality and the fun ahead of me.
Tomorrow is the Breast Clinic check for my mysterious axillary lump. Not worrying at all, lalalala. It will all be fine! Just scar tissue. Then I am back on minding my lovely DM who is doing well. I don’t really want to spend a week away from home but there isn’t much alternative.

Best wishes to all going through tests and treatment and waiting for results.
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@Littlestelephant I’m a bit further forward than you - I was petrified too but it wasn’t as bad as I expected. I needed painkillers for a couple of days & then I was careful for a few weeks but honestly you will bounce back. The lovely lady who did my U/S was quite sure she couldn’t see any, and the surgeon agreed. The pain down my arm was worse than the breast scar! I’m halfway through my radiotherapy now. Happy to chat if you have questions... hang in there. A journey begun is half over!

@Littlestelephant you will get through this! I am nearly a year on from BC diagnosis and never thought I would get through all the hurdles I have had to jump. Don’t look ahead, just keep plodding through a day at a time. This bit while you wait to start treatment is very nervewracking . It will be easier when you know the schedule for treatment. The nurses are wonderful and will explain and encourage you. Have you got a named Breast Care Nurse yet? Tell them how you are feeling as they will have heard it all before.