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Worried about spread and haven't even started treatment!

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ginnyg
Member

Re: Worried about spread and haven't even started treatment!

Hi Carole
Sorry, got confused with Peacock and your first name! Must be the chemo scrambling my brain! Forgive me ...Gx

ginnyg
Member

Re: Worried about spread and haven't even started treatment!

Hi P (What is your first name?)
Thank you for the update and you are right, I've just had my 2nd chemo last Tuesday - it all went well but today is the first day I haven't felt sick! Not bad I suppose, just a couple of days feeling bad and now just fatigue and a few other SE's. I'm on FEC x 3 and Taxotere x4 followed by a lumpectomy then rads - I hope all the treatments will be finished by Nov - they better be because I want to go back to England to see my children for Christmas! As you say the Healthcare here is second to none and I have been very impressed which makes me feel more positive. As I don't speak fluent French I keep looking at my Path report and am trying to makes sense of it. I know I have a 9mm Grade 3 aggressive tumor in my right breast which has spread to 2 lymph nodes under my arm and that it has 30% ostregen receptors - does that mean anything to you? I'm also HER2 negative (Score 1). I will put up with anything they throw at me as long as I can be assured it won't spread to any other organs. I've had all the tests, bone, liver, etc etc and all clear at the moment! If you can throw any light on the above I would appreciate it. I hope you are feeling better especially now with the depression - I'm not surprised with all you have been through - keep smiling Love Ginnyx

peacock
Member

Re: Worried about spread and haven't even started treatment!

Hi Ginny

I started chemo last June, a week after my dx and was supposed to have 8 rounds, but, after 6 my body had blown up with fluid so my Onc said I couldn't have any more. A month later in Nov I had a mx with full node clearance and I must say it wasn't too bad at all.

I was lucky, I had no node involvement and they got all the cancer out. In January I started 5 weeks of rads, everyday a trip to Montauban which meant a 3 h0ur round trip.

I am continuing with Herceptin, and am coming up to my 15th round. Have recently been diagnosed with depression, so on AD now which seem to be helping.

I think I expected too much after everything I've been through, and like you say doing it in a foreign country with language problems doesn't help. But the healthcare here is excellent, and the good thing is we get results straight away, no waiting around.

If I can help in any way please ask, I expect you've had your 2nd chemo by now (which one are you on?) so hope you aren't suffering too badly.

Love P xx

ginnyg
Member

Re: Worried about spread and haven't even started treatment!

Hi Carole
Nice of you to get in touch. I live near to Pezenas in the Herault, which from Toulouse is about 2 hours. I am being treated in Montpellier and I have nothing but praise for them, they've been fantastic considering I'm English in a foreign country and don't speak fluent French!
How far are you into your treatment and how are you feeling. Did you have node involvement and have you had your op? It's all a bit daunting as I'm just coming up to my second chemo!
Would love to hear from you, take care
Ginny x

peacock
Member

Re: Worried about spread and haven't even started treatment!

Hi all
Just thought I'd pop in and say hi, I think it is quite normal to be worried about every ache or pain once being dx but we can talk about it here and everyone knows what it is like, only someone with BC really knows.

Hi to ginnyg too, whereabouts in France are you? I ask because I too have been having my treatment here, at Toulouse. Like you I had aggressive IBC stage 3 and had chemo first.

Take care everyone

Carole x

ginnyg
Member

Re: Worried about spread and haven't even started treatment!

Hi
When I was paranoid about spread was before my tests and this took place before my chemo started - I live in France and maybe they do it slightly differently here. Chemo first, op second then rads. Once I heard from the Doctors that all my other tests were normal, suddenly most of my previous aches and pains ceased and a huge weight was lifted off me. I have a Grade3 aggressive 9mm tumour in my right breast and 2 nodes affected underarm. I'm in the middle of my first chemo of 7 (3 x FEC and 4 x TAX) As you say it is 'doable' although I'm still waiting for my hair to fall out and the fatigue is a big SE and joints aching but I do try and have a little half hour walk every morning to keep things moving! So far I've been lucky not to have any sickness and I'm eating a healthy diet, so fingers crossed that I'm doing all the things I should be doing. I swear my lump under my arm has already got smaller just in one week, maybe it's wishful thinking or my imagination and also it does hurt from time to time as if the chemo is having a punch-up with the cancer cells! Anyway you all have a good weekend xx

josyemarie
Member

Re: Worried about spread and haven't even started treatment!

Hi Marble,I can understand why you're feeling the way you are. Your breast cancer diagnosis must have come as a nightmare of a shock to you! You're not on your own here as we're all in the same boat and theres always someone to lend an ear or offer sound advice.I think most of us are a bit paranoid when it comes to seccondaries,Its not so easy to shrug off aches and pains as it was in pre BC days, but it does get better. I don't know what chemo you're having, I had 4xFEC,4xTax and it was nowhere near as bad as I thought it would be. I kept on working through most of it,and holidayed in the west of Ireland.... infact there were a few girls on here who've been on holiday during chemo.
Take it one day at a time at the moment. It is 'doable' and it does get easier.
Josie xx

marble1966
Member

Re: Worried about spread and haven't even started treatment!

Hi All,

I'm also extremely paranoid. 2nd visit to onc today and mentioned
that I have had bad back for months (before feb diagnosis) and also
pain in hip. Also went to GP about it, said just movement in hip.
Wasnt worried about either before BC, but now thinking is this also spread, even though I had no spread in glands.

How to secondaries get diagnosed, what are the symptons after first
diagnosis? went ONC today who is still encouraging chemo, horm tabs & rads and although hav accepted this is best course of treatment, still cant get my head around all this. Have been fine again (since 2nd lympectomy), today get told can't go on hol in July due to risk of high infection whilst on chemo, so now not only will i prob be bald for most of the summer, but no holiday either LOL! Do I feel depressed YES and have again today asked the why me, what have I done etc etc!

I have 3 children and although they need to be told, its very hard
telling them all the nitty gritty as you dont want them worrying
as well! Does it drive me made! YES.

cathjue09
Member

Re: Worried about spread and haven't even started treatment!

thankyou lucy

Lucy_BCC
Member

Re: Worried about spread and haven't even started treatment!

Hi Cathjue09

Breast Cancer Care publishes a book which may help you with the way you approach discussing the subject with your children.

It's title is 'Mummys Lump', it does tackle very sensitively some of the issues around communicating the issues you will be facing.

Here is the link, the book can be ordered via the website:

http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

We also have a dedicated area of the website on talking with children which you may find helpful:

http://www.breastcancercare.org.uk/server/show/nav.436

Best wishes
Lucy

cathjue09
Member

Re: Worried about spread and haven't even started treatment!

hi
just been dx with bc yesterday and i am so scared, have got to have op on the 24th april seems a long time to wait, i have two beautiful boys 9 and 6 how do i tell them? my 9 year old is suffering from anxiety already and has got to see a pycologist, please talk to me as i am so scared thanks

jantrigano
Member

Re: Worried about spread and haven't even started treatment!

Good morning All, I had my lump/lyph node clearance 3 weeks ago and have just got the results - lumpectomy very successful, good clear margin but 2 lymph nodes were found to be cancerous, so now awaiting a meeting with oncologist in a week or two. I am petrified of having chemotherapy and I too am convinced every ache and pain is a cancer spread. I am having a further chest xray today as I have a persistant cough, just to be safe. I have become paranoid.
The weather is sunny and lovely blue skies, it is so hard to believe this is really happening and although my husband is being fantastic, I sometimes feel so isolated and vulnerable. just feel like curling up and crying. But of course, I don't, I put on a brave face and smile.
Sorry for the rambling rant, just had to get it off my chest (no pun intended!).
Love to all - Janet xxx

debs
Member

Re: Worried about spread and haven't even started treatment!

we are all obviously the same! i to have extreme paranoia and was a very sensible person befroe dx! I have to get results post op of lump and lymph nodes on Thurs and have had so many aches and pains!! But we all seem to keep going with ups and downs!! Debs xx

Gennie
Member

Re: Worried about spread and haven't even started treatment!

Hi Ginny

Sorry we meet in such miserable circumstances. I was diagnosed just before Christmas and was in exactly the same state you are. Totally panic stricken, couldn't sleep or eat, couldn't think straight. Just awful.

I had a lumpectomy/WLE on 22 December - I had a 35mm grade 2 with no node involvement, ER+ and HER2-. I'm now 2 cycles into my chemo treatment and doing ok. I then go on to have rads and hormone treatment.

The panic subsides. You'll find that you do calm down and life can get back to some semblance of how it was before. The paranoia doesn't really go away though - every ache and pain is sinister and that seems to be a common feature for most of us. Maybe in time that gets better too, but I'm only 3 months in myself so it's earlyish days.

Keep posting here and you'll find more support than you would have thought possible. It's kept me sane these last few months.

freddiecider
Member

Re: Worried about spread and haven't even started treatment!

Hi Ginnyg

I too have extreme paranoia. I was told I had BC three weeks ago but have a complicated diagnosis so I'm still waiting for my lumpectomy on the 8th April.

In the meantime I'm convinced I have every secondary going. I am itchy all over and very tired (so worried it is in liver), I have sore glands ( worried all lymph glands are involved), a very sore throat and dizzy spells.

There are times I can't find the lump and it seems to be smaller. There are other times when it seems to be huge and I find other lumps everywhere.

Everyone on here has been great- not least , they have made me realise that these feelings are'normal'

Mind you- I've lost what 'normal' means!

Love Freddie xxxxxxxxxxxx

Suzytrue
Member

Re: Worried about spread and haven't even started treatment!

Hi Ginnyg
I am so sorry that your are going through hell at the moment, it is so terrifying when you get your diagnosis.

I would just like to tell you about my cousin Jean, diagnosed april 1998 aggrssive grade 3 tumor, we were all petrified for her as she was a mainstay of our family, always organising get togethers, we could not and did not want to envisage a time without her.

Thankfully Jean is still alive today and very, very well, she had massive chemo and rads which seemed it was going on forever but she is now like any other person who has never suffered BC and only gets called every 3 years. She did not have a mastectomy either even though there was big spread to her lymph nodes, I think things were done different then. She has lived her life to the full and travels whenever she can and spends most days with her grandchildren.

Hope this gives you a bit of peace, do take care and keep us informed of your progress,

Much love
Suzy

Gemdancer
Member

Re: Worried about spread and haven't even started treatment!

Hi ginnyg,

Just read your email and you sound like me back in October when i was diagnosed. A state of panic!!! You will find lots of support on this forum and from your breast care nurse. Although I think I may have lost my marbles a bit along the way(!!), you will also be surprised by how strong you can be. My breast care nurse told me to take one day at a time through chemo and she was right (although it is hard to stop your brain racing ahead!!). Once i had my diagnosis and before chemo started, I had terrible back ache, lost my appetitie and had tummy issues. All very mush stress related as it turned out. I think i was holding myself rigid with anxiety. My breast care nurse warned me this would happen and it did, although I imagined all sorts of things going on. The anxiety probably won't go away, but it does calm down especially when you get into the routine of treatment. It is very early days for you and you are responding to some devestating news.. you and your body are bound to be in shock!

Be kind to yourself, know that you can get through this treatment and talk to your breast care nurse and to the rather lovely and supportive women on these forums.

Gx

terrier
Member

Re: Worried about spread and haven't even started treatment!

I was diagnosed in Feb this year and what you are feeling is quite normal, it does get better, you will have good days and bad days. The aching in your other breast might be because you are just really conscious of every ache and pain. Tummy pains because you are anxious? Try and take each day at a time and don't expect yourself to be brilliant. Keep yourself occupied as you can, I found that helps. There are loads of people here in the same boat. Just keep talking and posting you will get all the help you need.

I have a lump in my right breast and they found another one, same breast on Thursday last week. They think this one isn't cancerous, bt aren't sure. Tuesday this week I had my lymphs taken out and then they'll decide what to do on Monday.

XXX

ginnyg
Member

Worried about spread and haven't even started treatment!

I don't know if anyone else felt the same once they were diagnosed with BC - apart from the fact that I can't stop crying, can't sleep, can't eat properly and am absolutely petrified, but I keep aching all over in particular in the small of my back and tummy and now I feel aches in my so called good breast! I have to go to have tests next week and then chemo starts on the 14th. Have had a metal clip put in my breast to mark the spot of the smallest tumour which is 9mm but it is grade 3 aggressive and I have a lump under my arm also, which I what I noticed first. I just need help and reassurance at this terrible time or I think I will lose my marbles.