The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Hi everyone and a special wave to everyone new
Missy I'm glad you had a favourable OncotypeDX and managed to skip chemo. I've just started taking tamoxifen a few days ago. My hot flushes haven't got any worse yet, but maybe they take time to kick in? After my ANC I hired a private physio after hearing the NHS wait was 2 months. It was well worth it and she helped me go from almost no movement to good movement in a month.

Outlaws this waiting period is certainly the hardest point. The scans and ultrasounds are quite good at differentiating a solid mass from a cyst, but not all solid masses are cancer. At my one stop clinic I was told that my imaging showed I had cancer and to come back in a week and bring someone with me. I remember being totally floored because I was convinced they would find nothing because I had been told the 9/10 referrals are benign statistic. That was a difficult week and my diagnosis had a few more blips - being told at my core biopsy results appointment that I had DCIS and no node involvement so no chemo needed - a very good day. Being told at my mastectomy results appointment that I had multi focal IDC missed by the biopsies and 2 nodes affected - a less good day.

I understand you were told your imaging was suspicious and I think it's good to be prepared. If it is cancer expect some ups and downs while your treatment plan is being devised. If you are on Facebook there's the younger women's cancer network with lots of people who are either pregnant or with young children, but you need a diagnosis before joining.

Tutti the difference in measurements of your tumour are part of the ups and downs I was mentioning. It isn't unusual and have different measurements between different imaging techniques and then surgery. It doesn't mean that your cancer is growing rapidly. Lots of people have grade 3 cancers - I did and I suspect most people on this thread did. Many of us on this thread are under 50 and so detected lumps rather than being diagnosed as part of national screening. When I was first diagnosed I felt quite annoyed that we have to wait until 50 to get routine mammograms. Now I feel more rational because evidence shows that while screening mammography is effective at detecting cancer earlier, it doesn't improve overall survival because improvements in chemotherapy mean both groups have a favourable outlook.

Mysillydog Thank you. I am over 50 and my cancer was spotted on the 2nd routine 3 yearly mammogram. All of my aunts developed cancer over 50, and an annual pathway was indicated, but not followed, due to my risk factors.
My greatest fear is that given I have Grade 3 with megamets in a third of my nodes, then the cancer has gone on a grand tour. I'm sorry, but I think early detection (annual mammograms) would have been better.

Anyway Lacies. Thank you all. I don't feel like I'm a great fit on this thread so I'll wish you adieu and the very best of luck to you all.

Before I go, I'd just like to say thanks to the woman that told me about mumsnet, hopefully without giving too much away. We met at the university hospital and you were great I was needle phobic and you had already had LH breast cancer two years ago, were having a biopsy on the right and had diabetes. We met again at the local hospital for the results and I had your previos surgeon and you had the female surgeon consultation. I haven't seen you since, so hope that the results were good; I've been thinking about you xxx

Welcome outlaws I can only echo what others have said. I was 46 with 7yo DD when I got my first diagnosis 2 years ago. So DD was fortunately too young to understand the realities of cancer but old enough to understand that I wasn't well and needed to go through various sorts of treatment. Whilst I didn't really cry for myself I shed so many tears for her and the thought I could be taken away from her.

As to getting the formal diagnosis, like you I was pretty much told at the first appt that it was bad news but I had to wait 10 days for the biopsy results. It was probably one of the worst times to go through. I ended up in a kind of unreality thinking well I can't have cancer as they don't have the biopsy results....but then it would be really unprofessional if they said I had cancer and I didn't. And round and round it went. As horrendous as it was getting the formal results at least I finally knew where I stood and could just get on with the plan

Hope you are able to get some distractions over the next few days.

Waves to all, hope you're all enjoying the weekend

And hello missy, good to hear that you can avoid chemo - thank goodness for the new tests they have now - hope the tamoxifen is bearable

Please don't go Tutti. We are all very different on this thread, but being grade 3 with node involvement and needing 2 ops is exactly my experience. We are also all different ages, have different types of cancer, are on different treatments and we are not all parents. The thing that ties us together is mutual support and the fact that this is a safe place to rant and let off stream, even if we are putting on a brave face in front of our loved ones.

Tutti I do not see how you came to the conclusion that you "are not a great fit". Is it something that you inferred from something posted on here or your own personal feeling?
We all come here to either support and be supported or both. There is no size or type or fit. In fact we have had people who came on because loved ones were diagnosed not themselves and we have had people come on during the wait for results only to later find they did not have cancer. It really is up to you, but I would like to reiterate that we whilst are all different we are essentially same here.

tutti - there are lots of different experiences on this thread. Now my active treatment has finished, I'm not on so much but I still dip in and out. Fwiw, I was diagnosed when DD (DC3) was 8 weeks old, grade 3, stage 3 cancer in both breasts. I was hugely supported by the women on these threads, who understood what I was experiencing even when I was "just getting on with it" to the outside world.

For Tutti and other new people I am posting the reply that Amberlight gave me when I was newly diagnosed and upset that I have lymph node involvement.

amberlight Fri 06-Nov-15 10:36:53
Hi Mysillydog, sad to learn that your team are thinking it's cancer. Assuming they are right, the wise people of this thread are right to say that the odds are very much in your favour these days. New treatment options are coming out almost faster than we can read them.
The important first thing is that lumps in the boob cannot kill people. Totally impossible. So if that's where they are, you're still firmly alive.
The lymph nodes under the arms are there as a 'safety net' to stop cancer cells getting anywhere else. If it's got into those, all that has happened is that the lymph nodes did their job. Still firmly alive.
If by some extreme rudeness, it's got somewhere else in the body, the team have upwards of 30 options available for nearly all sorts of more rudely behaved breast cancer now. They can convert it to 'long term nuisance' for most people.
To give an example, people who find it's got in their liver, and is a single lump there, still have an 80% chance of seeing old age. Loads of ways to zap it.
There are no guarantees. Breast cancer is not a fun thing to have. Treatments are eye-crossing things, but they are do-able. Especially with good support.
I think you are wise to go to a bigger more expert hospital. They can easily get the local one to do routine things for you - but the main specialists are good to have.
If you feel like letting us know results from tests, then we can give you the nifty new news on it. So will your team.
Meantime brew for you.

Sorry, don't want to upset anyone. I've never been on any forum before and lurked for a while beforehand, but don't seem to get the hang of this posting. I don't seem to be able to bring anything to the "party". I'm very OCD and my DD says I would be "on the spectrum" if such a diagnosis existed when I was a kid; so it really is just me.
The only emotion I've had since diagnosis is utter rage ; haven't shed a single tear, and since Friday when I didn't get the histology hormone/protein because they forgot, it isn't getting better. I'm so angry I don't think I'm good to be around or interacting with anyone at the moment.

It's really ok to be angry, you don't need to be positive here. I would never have guessed that you have not posted on an internet forum before, and I definitely identify with being somewhere on the spectrum.

It's not great that the receptors were not available on the histology report, but they will be ready before you need to start chemo. Delays at the beginning of treatment are also not unusual. I was told to expect cancer in November, had my mastectomy in December, my ANC in January and started chemo in February.

Hopefully you will get your surgery date soon - you said it could be this week? I know how you feel about being concerned about passing this on to your dd. I have two dd's but do not qualify for genetic screening because my mum has not had cancer. My maternal grandmother had ovarian cancer in her 50's so it is a concern.

Afternoon all, I've missed loads while I've been waiting for a new charger for my laptop (DS1 is going through a VERY clumsy phase and tripped over it) so apologies for not being quite up to speed on everyone's progress!
Welcome to everyone new here, the best place to be if you unfortunately have to be anywhere with cancer.
I've done 6 weeks on tamoxifen now and the hot flushes are much the same overnight but are creeping in to the day now which is a bit depressing. I've found no proper relief for them but might try acupuncture again - the first lot didn't make much difference and I cancelled the 3rd session, if I'm brutally honest it was because I couldn't actually face going back to the hospital after I finished rads. I just couldn't .
In a TMI question about nipples... where I had the rads and booster I've lost all the top layer of skin on my right nipple, it's uncomfortably sensitive, I wondered if anyone knew how long it takes to settle down? The rest of my skin just peeled and that was that, the nipple reminds me of the worst part of breastfeeding where I was so sore.
I know fresta, rovercat and mysilly at least are roughly at the same point post treatment? I find I completely forget about the cancer for short periods of time now, then I have a sudden really sharp kind of mental wallop where the thought of it returning literally hits me. I guess I'm going to have to learn to live with that.
We're off for a few days on the Isle of Wight on Tuesday morning so I'm spending the weekend getting all the kids school stuff ready, DD starts at Juniors and DS2 goes straight on a 5 day residential (back to the Isle of Wight!) that following Monday. DS1 has till the Wed and I'm back at work on the Tuesday. In my new post cancer don't give a shit about the small stuff attitude I decided getting home on the Sunday late afternoon would be perfect and we all deserved as much holiday as possible - now I'm thinking that was a mad plan! Ah well, it'll be fine

Hope you stick around tutti, I have enjoyed 'chatting' to you. I can understand your frustration with the delayed receptor report. I have had several delays with testing,biopsies etc. I first saw the GP in May and am still waiting to find out the full information . Everyone has had different experiences and it really helps to share them with others here. Best of luck to you

Hi tutti. Please don't feel you have to bring anything or console anyone else. It doesn't work like that, people post in different ways and give and take in varying amounts. We don't know each other in real life, although a few have met, we're different ages and at very different stages of life and illness.

Rage is absolutely normal, I'm livid beyond words two years on. No family history, healthy, don't smoke etc etc but it still got me. I have even looked at my friends, my best friends and thought why not you because you don't look after yourself. That's a terrible thing to think and of course I don't really feel that but still, it's been there.

Amber, who has been mentioned recently, reads a lot of scientific papers and was brilliant at putting them into terms we could all understand. I believe she is autistic, she was brilliant at facts and common sense and I really wish she was still posting. It was a different style but so very relevant.

I'm two years on from active treatment but I still come here. I've become very aware that there are people who lurk, hopefully with good intentions and I think it's important to show that life goes on plus I really want to see how everyone is and help others who find themselves where I was two years ago.

It would be absolutely fine for you to ask questions, post about what's on your mind and not get caught up with everyone. Nobody will mind, treat us as a great resource if nothing else. There's a lot of knowledge on here. Whatever gets you through, but if you do decide to go, very best wishes for successful treatment.

Tutti there is no right way to participate in this thread/ forum. As the lovely lacies before me pointed out, we have no expectations and the way people react, express themselves, even the way they type varies. We have no tradition or rituals here..you do not have to mention everybody when posting..you don't have to show interest in everybody's posts. Anger is very natural and I assure you not far from most of us here.

Tutti please do not feel you have nothing to contribute. You absolutely do, just by sharing your experience. And, to be brutally honest, your style of writing has brought a smile to my face on numerous occasions - and you've lifted me as a result. Rant, be angry, be whatever you want - we are all going through the same thing - no matter what type, grade, stage, age, nodes or no, the diagnosis is still fucking cancer.
Lurk away if you need to, we are always here

Pepper, I'm around the same place as you. Nipple has gone through a few layers of skin rebirth, settling down now, 2 weeks after rads, and I've a lovely round spot above like someone has done cupping on my boob from the booster - also settling down. Aloe Vera gel works a treat ( and NOT Forever Living type, may I add ).

Somebody mentioned Emu Oil ( sorry can't remember and can't scroll on phone) re numbness in arm - am interested to know more?

Right, we got back from hols at midnight last night, I've an overtired, hyperactive 17 month old after going to a party today and so I'm pouring myself a large glass of

all round?

Tutti no need to go just pop in and out as you like, lots of people do that and it's fine. Good luck for the future if you do decide to go though

Pepper have a lovely holiday I love the Isle of Wight. We are back to school here on Tuesday where has that summer holiday gone ?

Hope everyone has a good bank holiday, typically it's raining here !

It's a lovely day here. We are away at the seaside in the Southeast but sadly I have to leave in an hour because I have a herceptin appointment this afternoon. Waves to everyone and especially Sleepy.

Hope everyone is having a lovely bank holiday, beautiful sunshine here in Gloucestershire. Off to my yoga class, its that and Pilates that keep me sane these days! Only started them both about 8 weeks after surgery and I love it!
Have a great day folks.

hELLO ALL.
i'M THE ONE THAT RECOMMENDed Emu oil.
My Husband sya s that I smell like an EMU. I think that this should be in reLArtionships really; because my husband has been sniffing emus behind my back . Ps it's my wedding anniversary today ans I have had alchool.

Happy anniversary tutti and Mr frutti
What does an emu smell like?

Ha Ha tutti now im thinking of Rod Hull and Emu!

Happy anniversary tutti!

Hope everyone is enjoying the bank holiday. Quick question for you - I know it's only 3 weeks since my op so early days yet but I am getting really fed up of the nerve pain caused largely I guess by the lymph node biopsy.

The back of my arm down to my elbow just feels like it is on fire most of the time and is worse if it touches anything (which is quite often). I'd stopped taking the paracetamol that the hospital gave me but have just started it again now in the vain hope it might give me some relief.

Any suggestions?

Amitryptaline (sp). Is an antidepressant but used in small doses for nerve pain. I take it and it works really well.

Thanks wee. I'll see if I can get some of that as it's getting all a bit tiresome

Mintyneb it is early days but nerve pain is a bugger isn't it? I had a lot of trouble with it, I did find once I started physio that definitely helped. Would you be thinking of having any physio at all? I definitely recommend it.