There are so many positive people out there that I feel I should revert back to the way I was prior to me seeing the oncologist and that was being 'positive' which came naturally.
I have just received (about 15 minutes) ago a call from the Lister Hospital in Stevenage where I will be having my Chemo. I phoned them this morning to see if they could tell me when I would be seen. Unfortunately when they told me that they had put on all the patients for next week's list and I wasn't on it, I gulped back my tears and tried to thank the nurse on the end of the phone for her help without sounding tearful.
My first appointment for my treatment is next Thursday 28th January at 12pm and then my chemo starts on Friday 29th January at 1pm (day before my son's 22nd birthday) (children are so important aren't they?)
I will be having FEC 100 3 cycles and Taxotere 3 cycles then radiotherapy, Herceptin providing my cardiology assessment is ok and Tamoxifen.
Good luck and love to all of you out there.
Gosh finty, I thought my node involvement was high (20 out of 23). Not seen many people post numbers as high as ours.
I don't have any secondaries (yet). Hhhmmm.
Good luck with getting yours under control. xxxxxx
Thanks Steph - given the very high node involvement (27 out of 33), my secondary is very small (3mm spinal tumour). So in some ways I feel lucky - I was preparing to hear much, much worse. Just have to trust the drugs to do their job.
finty - bad luck on the shock of finding all nodes positive with a non-aggressive tumour. Just goes to show there are all various combinations of tumours, node involvement etc. Hope the treatment isn't gonna be too bad for you. XXX
Hi there, I think everyone will agree that your feelings are perfectly normal under the circumstances.
Could I suggest that you make an appt on you own to see your specialist nurse and just off load to her.
At home I try to be 'normal' for the sake of husband and sons, even when I'm falling apart inside and have to keep going in the shower for a cry, so that I dont upset anyone else. I've been twice now to see my nurse and have just wept buckets and off loaded all my feelings. you can tell her anyting at all and it will stay with her. You will feel a hell of a lot better after, and it gives you positive strenght to carry on.
I'm a nurse myself and if someone had told me a year ago I'd be seeing a specialist nurse to have a good cry with, I would have laughed, but seriously, she has been an absolute rock.
I have a 14 year old son who had a real problem with my hair loss and I went out of my way to protect him, always wearing wigs/hats 24/7. Then one day I'd had enough, yes, I need to take into account his feeling, but at the end of the day, this is about me, not him. so I stopped wearing headwear in the house unless I needed to, he didnt like it to start, but after a day or 2 it was the norm and have not had a problem with him since.
Deal with each day as it comes, fight one battle at a time and you will win the war.
rozita if the swelling is bothering you I really don't think you should wait until the 28th to see someone.
Yes Steph - I was warned, but I have to say I really didn't expect any lymph node involvement. Lump was quite small and not very aggressive, so we sampled 5 nodes, but all came back positive. I will have a year on Avastin - which like chemo will be by IV every 3 weeks, then 5 years on Tamoxifen. I know they are not as harsh as the initial chemo, but there can be SE's, so I am not expecting to feel completely normal for quite some time. Plus I will have 5 weeks of rads in 4 areas, so need to be realistic about having some complications from that. I have a secondary, so may need additional treatment for that if it doesn't respond to chemo and rads.
I've been told I'll be on tamoxifen for 5 years. Also told at the first results appt, the biopsy one, that chemo would be on the cards if found in my sentinel node. It was, so no surprise re chemo. Just disappointed it was found in s node. Are some people not warned from the outset?
hi finty just read ur message sounds similar thought just lumpectomy n rads but was told 6mm in node so have just had clearance on monday but came home th next day without drains uncomfortable n swelling up at moment going back 4 results on 28th n seeing oncologist then no its chemo n rads but was a bit scared when u said years i tht just months is tht th drugs? xxxxx
I think your reactions are very normal - I wept buckets when I found out I would need chemo. Started off thinking just a lumpectomy and rads, all over in a couple months, easy peasy, then node sample cam back positive, as did the node clearance - and suddenly treatment is stretching out for years. I was devastated. My lowest point was deciding to do a bit of research on Tamoxifen, and started worrying about 5 years worth of se's. At that point I decided that the old cliche, one thing at a time, was the right approach for me. So now I am concentrating on FEC - one more to go. Only after that will I think about Tax, and only after that rads.
I also find it very difficult to talk to my mother (late 70's) about it - makes me very emotional, which is hard on her. I try and keep things light and breezy, but whenever someone looks me in the eye and asks how I am doing - you know that look - I always buckle. I wish there was a technique for dealing with this - I find it so embarrassing with people I don't know very well.
Your feelings are very normal - i had mastectomy on 29th Oct and wan't upset when I was diagnosed ot thru surgery or even when i suffered a terrible infection in would and ended up in hospital for over 2 weeks - i just kep saying this is a means to an end - but like you i expected hormonal treatment only, and was devastated to learn that i had to have the whole package - the one and only time i cried in front of the onc and bcn. i am now half way thru chemo and start hercepton in 3 weeks time. i won't kid you i found chemo really difficult some days but it is do-able. my children are 12 and 18 and seem to be coping well with it all - it is my 73 year old mother i am worried about - she insists on coming to every appointment with me so i can't protect her from anything.
i am now thankful that my onc is treating me every way possible and as i said i find some days really difficult i know it is for my own good and that keeps me going - that and the support of my fabulous friends and family.
good luck with the house move, i hope it is not too tiring for you and very best of luck with the treatment - you will come out the other side (albeit with a new hairstyle). remember you are allowed to have weepy times you have already been through a lot - thats what this forum is all about - good times and bad.
Love and hugs to all
I know how you feel i had WLE/SNB in Nov and was told i would need RADs,Tamoxifen....then when saw the oncologist was advised to have chemo(the rug was well and truly pulled from under me,gutted)was told that if i was given chemo i could be given Herceptin so all bases would be covered.
Had 1st chemo(FEC) a week ago and wasn't as bad as expected,just had a few hot flushes,mild headaches and constipation(due to antisickness drugs).I am now waiting for the hair loss to start which i suppose is what we all dread.
good luck with your treatment, I just keep thinking that if i am having all the treatments im getting the best possible chance of chasing all the little cancer buggers away.x donna
I am going to be having the lot too - halfway through the chemo bit now (had 4xFEC, got 4xTaxotere to come), and Herceptin will be starting in 3 weeks time.
Rads in April/May and Tamoxifen or some other hormonal treatment alongside the Zoladex ovary suppression I am already on.
I suspect this has hit you harder as the more treatment they give you, the more serious it seems (and is, in fact). I get a little bit wobbly whenever I see the oncologist and he confirms the next stage of treatment and looks at me seriously and tells me "I want to do everything for you to prevent reoccurrence". Gulp.
But I am glad that there is a range of treatments they can give me. I am glad he is doing everything he can. All I have to do is get through it.
I have sailed through FEC and my mastectomy (I won't get recon for a while yet), and am hoping the Tax will treat me well.
Let's hope you can also sail through the treatment.
Sorry you are feeling so down.Its a h*ll of a lot to face.Especially if you hoped to get away with just tamoxifen.But just think each one of these treatments is giving you the best possible chance.
It might be easier to just take one treatment at a time and forget the others till they happen.
I didn't want rads but actually I changed my mind and decided I wanted them,sometimes you just need time to get your head round it.
Love n hugs
Sorry you're feeling so down at the moment. You've had so much information to take in & digest that it's no wonder your heads in a spin...especially if you were all geared up for no Chemo!
We've all been there tho & understand how you feel. I'm triple negative, so don't have the back up treatments of herceptin or tamoxifen, but I had mx & lymph node clearance (no recon) back in August & have had 7 of 8 chemo's, with 5 weeks of rads still to come.
In my case I was surprised to find that the mx didn't affect me too much. I healed well & it didn't impact my life in any way...but the thought of chemo & our perception of what it's going to be like with all the horrendous side effects we hear about..well, that's a different story. The thought of Chemo really upset me & I struggled to go a day without sobbing uncontrolably!
The reality though isn't that bad....really! I have 3 children (3, 5 & 10) & have managed to carry on as normal pretty much throughout my treatment so far. Okay, so Chemo isn't pleasant, but it is as they say 'doable' & you'll find support on the forum from the most amazing ladies.
I know it doesn't feel like it at the moment, but the tears will pass. You'll have good days & bad days like us all but before you know it the bad days will be few & far between...and we're here to listen when you need us.
Good Luck with your treatment
I have had Chemo, radiotherapy and I'm now on Herceptin (half way through) and I'm on Tamoxifen and can honestly say that I have more or less sailed through. I didnt have a mastectomy, had a WLE/SNB and a couple of more ops to get clear margins back in October 08. Had Epi/CMF chemo Nov08 - May 09, five weeks rads in June, started Tamoxifen same time and as I say I'm now on Herceptin (last one due 30th July).
Please believe me you will be fine - I can't believe how fast it has all passed. In my opinion you have done the brave bit having a mastectomy and coming to terms will the change to your body. Ok chemo makes you loose your hair but it grows back - and mine has come back thicker than before.
I also have two adult children! Two boys 21 and 22 and they have coped fine, my eldest took me for some of my chemos and the youngest is coming with me for my Herceptin on Friday as he was abroad when I was having treatment. Thankfully they were not embarrased by me going bald when I felt too hot - even in other peoples company. I think my "what the hell" attitude probably helped!
So I hope that this has helped in some way - you have done so well so far and I'm sure you will cope with the treatment - it probably came as a bit of a shock if you weren't expecting to be told you would have "the works".
If you need to know more about any of the treatments feel free to ask away or send me a pm.
Take care, hugs Sue xx
I am so sorry you are feeling this way. I am sure your feelings are perfectly normal. We all react in different ways. Maybe it is the fact that you hoped 'active' treatment was over and now it is going to carry on much longer than you hoped. I am not in your position as I had a WLE/SNB in September last year, have recently finished radiotherapy and am on Letrozole for five years, but I do empathise with you. I also know what you mean about worrying about your grown-up children. My son is 26 and I was fine until the BCN asked how my family were coping and I burst into tears.
When you get going with the treatment, I am sure you will feel different. It is a means to an end, after all.
Hopefully, someone will be along shortly who has had the same treatment as you.
I wish you the best of luck.
I saw the Oncologist today for the first time after my Mastectomy on 17th December 2009.
I was hoping I may get away with just having to have Tamoxifen but no, I have to have everything, Chemo, Herceptin, Radiotherapy and Tamoxifen.
When me and my husband left and we were walking through the corridors back to the carpark, tears were streaming down my face. I didn't cry when I was told I had had Breast Cancer in June last year, nor when I was told I had to have a mastectomy nor when I saw my swollen, bruised nippleless reconstruction on 18th December last year. But being told I have to have Chem, Herceptin, Radiotherapy and Tamoxifen has made me really very weepy, even now (seven hours later).
We are also having to move as we are in rented accommodation and were hoping to buy the house we are in but it is too much so we have to move in three months time.
Has anybody else had Chem, Herceptin, Radiotherapy and Tamoxifen? I'm so worried about my children although I must admit they are 20, 21 and 24.
Thanks for reading this.
Best wishes to all of you out there.