Told I will be having chemotherapy...........help!

[missmore]

Thanks carole

I was stage 2 grade 2 but mucinous no nodes but it was a big bugger so really didn't expect this.  2% makes it a bit of a gamble really! Have done all the reading etc and nowt is helpful right now so a wine assisted sleep for me

Night night ladies xxxx

[carolec]

Can I join in - I originally expected Wle and rads but now I'm going to have chemo. I saw my oncologist last night and he said chemo increased the survival rate by 4% for me but as I'm her2 they advise I have it. As mIne was stage 1 grade 1 which is unusual to be her2, they are going to give me the weaker chemo - I'm having 12 weeks of taxol, rads and herceptin for a year plus anastrozole. I don't envy you having to make that decision - it's a tough one but I'm sure there are a lot of ladies on here who have been in the same position and can give you some good advice. Best of luck with your decision Sheena xxx

[missmore]

Sandra, thanks so much,  am currently hitting the wine bottle,  my way to get over the hurdle,  will pm you later if that's ok m'dear 

sheena xx

[hopefulholly]

Hi Sheena, I was in the same position and feel for you. I'm sure others will soon come along and offer words of advice as this seems to happen to a lot of women. However, it is a lonely place to be as it's a helluva decision only you can make. 

I did as much research as I could then went to mtg with onc armed with a list of questions. It wasn't an easy decision to make but I felt better (and a bit scared, I'll be honest) once I'd made it. I asked my onc if she would have chemo and she said she would, bearing in mind she is 10 yrs younger than me. To which I replied, I'm 54 but want to live to 100!  I don't believe that oncologists offer chemo lightly. In my case, I have an estimated 3.5% benefit. Even that wasn't the deciding factor, for me it was because I'd always be worried that the bugger could have spread and I hadn't done all I could to prevent that from happening (I had some vascular invasion and lymph node involvement).  

I did worry and felt guilty about my husband and boys - that I was going to 'make myself unwell' for a few months but, as my family have said, I'm not making myself ill, I'm making myself better. 

I completely understand why women choose not to have chemo, it isn't for everyone. 

I never expected to have to make decisions on mx / wle, then chemo. In some ways it's easier if the decisions are made for us by the onc team.  I'm sure you'll make the decision that's right for you. Good luck with it and if you have any questions I can help with, please contact me here or by msg. 

Take care, Sandra x (ps, I had my first chemo a week ago today and I'm doing ok, touch wood!)

[missmore]

Hi everyone

have been to see the oncologist today and have a decision to make as to whether or not to have chemotherapy

my original plan was to have wle, rads and tamoxifen but on meeting with surgeon he dropped the chemo bomb so to speak

Oncologist was lovely,  and she said I would have a 2% benefit from chemo, I have a week to consider and  tell her my decision next Tuesday

it's hard being left to make a decision rather than being told that you have to do it! 

were any of you ladies in this position, any thoughts 

sheena xx

[hopefulholly]

Interactive thyroid (!), sounds like science fiction, duh, predictive text. Of course should read underactive lol!

[hopefulholly]

Hi Kilimanjaro, thanks for checking that, Hope you're doing ok x

[minimanda]

Hi Sandra I was the same as you lumpectomy and hopefully just radio then found out I needed chemo. I'm halfway through now and one thing I have realised is everyone is different. It hits me the weekend after tx on the Wed then I'm fine for two weeks so plan things then. Rest when you're tired listen to your body but try and plan nice things too. Mine has flown by and there have been tough times but not as bad as I thought it would be. As I say everyone is different just see how first one goes then others will be much the same. Good luck

[hopefulholly]

Hi Sandra, it's good that your next surgery is taking place next week and you already have an appointment with the oncologist. I'll be thinking of you on Thursday, please let me know how you get on.

I'm actually fine at the moment thanks. After 4 sleepless nights, effects of steroids have lessened and I slept for 8 hours last night. Side effects of chemo not too bad but my eyebrows are thinning already (!), mind you I have an interactive thyroid so they were quite sparse anyway! Taste buds have also gone, couldn't even taste a curry last night. I'm lucky compared to others though so not complaining and know it's early days for me yet. Take care and keep in touch, Sandra x

[SARN66]

Thanks Helenm1

Glad to hear that your side effects from Chemo hasnt been too bad.  I am 49 and otherwise healthy so I hope to cope okay.  It is so comforting to be able to chat to others going through this difficult time.  Keep in touch and let me know how you get on with further treatment, all tips and ideas gratefully accepted 🙂

Sandra x

[SARN66]

Hi hopefulholly,

I now have my 2nd op date for this coming Thurs 2nd July and an Oncology appt on 13th July, so I am glad I dont have to wait to long.

How are you feeling today? Hope you are not feeling too awful!

Best Wishes

Sandra x

[kilimanjaro]

Hi Riversidedawn

Hope you don't mind me dropping in on your post to hopefulholly. I agree with you, oncologists have their ideal scenario but sometimes that doesn't happen for whatever reason. As you say, you are taking tamoxifen and that's what is important to the oncologist. x

[riversidedawn]

Hopefullholly, don't worry, I'm not worried! I think they have their ideals for timing etc but every case is different. Initially onc was adamant no longer than 4-6 weeks between chemo and rads which made my recon difficult, in reality it going to be nearer 12 weeks and he's happy as long as I'm taking the tamoxifen.

[kilimanjaro]

Hi hopefulholly

Hope all continues to go well with your treatment and I think you did the right thing talking to your oncologist, stating your point of view about your treatment.

I asked my oncologist about when chemo treatment should begin when I saw her awhile ago and she said that they wanted to begin treatment within 60 days from surgery. Therefore, if you've had 2 surgeries it would be 60 days from the last surgery. Of course, Kilimanjaro being Kilimanjaro, I googled this and found various research papers concerning surgery and chemo just to make sure! 

Have a good weekend. x

[hopefulholly]

I'm sorry to have caused you worry. I believe the onc's reference to a 3 wk window was from the date I met her, not from my ops, so my first chemo was actually 8 weeks after my first surgery and 6 wks after my second surgery. Hope that makes sense and alleviates some of your concerns. Take care x

[riversidedawn]

Caroline you are a breath of fresh air! I cannot imagine going through this again, let alone 4 times!! Hopefulholly I'm concerned about the 3 week gap - my surgeon wouldn't let chemo go ahead til my MX scar had healed so that was about 5 weeks, even then it was slightly open and she said it would be OK. Unfortunately it never healed and I had 3 months of infection until I had my implant removed.

[helenm1]

Hi Sandra. I just started my chemo 2 weeks ago. I'm 52 and healthy. I had steroids for 3 days around chemo date I didn't sleep too well for the first 4 days and I felt achy. After that I started to pick up again as long as I had a bit of a rest. I have 5 more to go and my hair has just started to shed but I accept it as part of the recovery and have a wig and various hats. I hope you do well.

[lalie]

Hi sarn, yes it can be scary the thoughts of having chemo. I started yesterday having chemo , but I first had it in 2007 then since 2013 I'm on my third chemo . So In total I have had it 4 times. My best tips to you is , eat healthy lots of fruit and veg every day . I make a fruit smooth every day , no alcohol just plenty of water and couple of coffee every day. I have managed to stay healthy whilst on chemo doing this. In fact I'm off on holiday for the weekend and only had my chemo yesterday. The only down side for me was every time I have lost my hair. So I have just left it bald as I don't like wigs. It soon grows back. Chemo has never stopped me living my life as near to normal as possible. Yes some days I'm tired but I just take it more easy. Keep in touch would like to know how you get on. Caroline xx

[hopefulholly]

Hi Sandra, yes, I'm sorry, the anc is ancillary node clearance.

I've been fortunate to have had quick treatment. Here's my timeline: diagnosed 14 April, first surgery on 22 April, deferred to 29 April cos of chest infection; results on 12 May, 2nd surgery just 3 days later on 15 May; results on 26 May from bcn nurse, not consultant (remaining nodes clear). This is when things slowed down a bit. Unlike you, chemo wasn't on the agenda for me until I met with the oncologist so that appt was a bit slow and I had to chase it up (less rush if rads).   So met with onc on 9 June, following long discussion around lymph nodes (1 macro, 2 tiny trace of cells but extra capsular spread), focal vascular spread (blood stream), my age (54) and increased benefit from Adjuvant Online (compared to Predict used by bcn nurse), we jointly decided to go ahead with chemo - appt for bloods, weight etc week later then first chemo following week on 23 June, last Tuesday. 

This is a long way of saying I was 5 wks between last surgery and first chemo. The reason for so much detail is because, when I met my onc on 9 June, she said she had a 3 wk window to commence chemo for it to be beneficial. I do wonder if I'd have missed that 'window' if I hadn't chased up appt with onc. Of course, as chemo is already part of your treatment plan I imagine your appt with onc following your next surgery will be sooner, I just thought it may be helpful for you, and others who may read this, to be aware of this.

Wishing you the very best with your next surgery. Take care x

[riversidedawn]

Good advice from others Sandra. Try not to over think it and get through your surgery first.

I found yoga throughout treatment really helped - partly to relax but also for strength and flexibility.

[1852]

Sandra don't know where you live I accessed haven charity in Leeds who offer complimentary treatments I live in w/Yorkshire my nearest one was Leeds I know a lot use maggie centres a lot of which are near hospitals hope this helps good luck x

[SARN66]

Thank you Sandra and Vic55,

I think you are both right, i have probably read too much info about ALL the side effects from chemo and convinced myself I will have them all.  It helps me to feel prepared but I will try and take one step at a time and I have more surgery to face first.  2 weeks today I had my last surgery and I am feeling almost back to normal.  I have a a seroma which has been drained twice but feels more comfortable today. 

Sandra - please dont worry about how long your reply was, it was so good to read that someone else is having a similar pattern of treatment.  How soon did you start Chemo after your last op? Does anc mean node clearance?  I presume so, i guess that is what i will be having too. I have been told i will hear either today or tomorrow with a date for my next op.  I have decided to go back to work next week just 3 or 4 hours a day, my boss has been wonderful and says I can do whatever i want to do.  Keeping busy, some normality and chatting with the other girls will hopefully keep my spirits up and my mind otherwise occupied for a while.

The reflexology sounds a great idea, i think i will find out if they offer locally. 

Glad to hear that your chemo hasnt been too bad so far.  I have an appointment next week to see my hairdresser and had already thought about shorter style.  My hair is quite long and hi-lighted at the moment so will be a dramatic change but I would prefer to make some changes now rather than wait until it starts falling out. 

I also have a sister and she popped round last night with an wooden ornament of two women holding hands with a plaque saying 'Walk with me and along the way we'll share everything'  It helps so much to know there are others to share the good and bad times with.

Hope you continue to feel well during chemo, let me know how you get on with cold cap too. 

Thanks

Sandra x

[hopefulholly]

Hi Sandra, another Sandra here!

I had similar diagnosis (but with some vascular spread) and had my first chemo 2 days ago, doing ok so far but I know it's early days yet. I've also read how each person's experience is unique but there are some general preps that you can find in the chemo tips. I was advised by my onc to get my shoulder length hair cut as short as I could manage before treatment. I went to a fabulous salon, found a beautiful natural looking wig then had my hair cut in the same style. That really eased my worries about any hair loss and is one thing that I do recommend. I did use the cold cap, really struggled for the first 10 mins I'll be honest, but it did get easier. Whether I use the cold cap next time will depend on how much hair loss I have between now and then and how I'm feeling on the day. I've decided not to beat myself up if I can't manage it but, as with everything, it's a personal choice. 

I've had 2 surgeries (wle / snb then anc). Treatment plan changed from radiotherapy and hormone treatment but then to include chemo first (3 FEC then 3 T) - I approach everything in the same way, prepare for the worst and anything less is a bonus - that works for me. To be honest, I've managed to stay relatively calm throughout this experience and positive which is unlike me cos I have always been a worrier. I think I've got into a fight mode and know I need to be strong to get through this. A gift plaque from my sister reads ' You are stronger than you seem, Braver than you believe and Smarter than you think' and I believe that is true of all of us. 

If your stress levels are really high maybe consider accessing complementary therapies? I'm booked in for a reflexology / aromatherapy session next week from a local cancer support group and I'm really looking forward to it. Between my last surgery and start of chemo, my family gave me lovely treats in case my appetite / taste buds were affected from chemo (afternoon tea, beautiful lunches, family BBQ etc.) which helped keep me busy and take my mind off things if only for a little while.

I would advise to focus on the next surgery, try to put the chemo on a back burner for now, of course it won't go away but it might help to reduce the panic feelings you're naturally having right now. It doesn't hurt to research and pick up tips but bear in mind that not everyone experiences all the side effects and not all the tips work for everyone (i.e., tip to eat pineapple to help with ' metallic taste' would have me doubled up with indigestion!).

Finally, tips for recovering from the anc - soft pillows (incl a V pillow), plenty of fluids, keep up with painkillers, definitely do the exercises (I'm 5 wks post surgery and have almost full movement in my arm and shoulder), natural constipation remedies like Movicol - not Fibogel, I learnt from experience lol!  Rest when you need to and 'allow' family to help - it helps you and them knowing that they're doing something useful.

I'm sorry, I tend to go on a bit and haven't mastered the art of short, succinct sentences! Good luck, feel free to msg me if you have specific questions that I could help with. Take care x

I'm afraid I've gone on a bit (I tend to!) but 

[vic55]

Sandra I was same as you, chemo got added due to tumour grading and size. I had first blast on 10th June, and managed ok. Found drinking water, taking all anti sickness meds helped. Next issue will be losing hair, but will deal when it happens. Just try and be kind to yourself. And ask the chemo nurses anything they are there to help.

[SARN66]

Thank you for replies,

I dont know what Chemo yet because I have to have another op first to test more lymph nodes.  There seem to be so many different chemo meds that it all seems bit confusing.  Once I have more info I will ask for advice from ladies on same chemo.

Some ladies seem to have very severe side effects and others not so bad.  I will try and be as well prepared as possible and then just take each day at a time.  Bit scary!

Sandra x

[Sam_BCC]

Hi SARN66

I'm sorry to read you're having a tough time at the moment.  I've added here a link to the thread 'Top tips to get you through chemo'  It contains lots of information from others who have undergone chemo.

http://forum.breastcancercare.org.uk/t5/Chemotherapy/Top-tips-to-help-get-you-through-Chemotherapy/m...

If there is anything further you would like to talk through do give the helpline a call on 0808 800 6000.  Here you can share your feelings and concerns with a member of staff who will offer you a listening ear as well as emotional support and practical information.  Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator    

[Herewego]

Hi Sandra,
sorry to hear your treatment plan has changed but given that they found infected lymph nodes chemo gives you best chance going forward.
Do you know yet which chemo you will be on?

I've had 4 lots of 3 weekly EC and 8 out of 12 weekly Taxols so far. I have to admit that it hasn't been as bad as I thought originally
- yes I had some nausea but the anti sickness meds kept things under control
- I also had an infection (neutropenia) but that was dealt with quickly with iv antibiotics
- I lost my hair but that was partly my choice (I tried cold cap but didn't get comfortable with it at all and also not that fussed about my hair); I shaved my hair on mother's day and it's been no.2 cut ever since
- Taxols has thrown it's own side effects but on whole it's been easier than EC

Please see top tips threads on this forum so lots of good advise and preparedness for chemo. And feel free to ask any question you have x

[SARN66]

Hi Ladies,

I was told at post op appt yesterday that lumpectomy successful, clear margins but found some cancer in lymph nodes so will need further surgery to remove more lymph nodes and then Chemo.  Initally was told Rads only so am now in shock and coming to terms with months of Chemo and another op first!!

I have been reading lots of helpful info on side effects of chemo but would welcome advice from anyone going through Chemo now, any hints and tips to get through it!! Preparation advice?

I have been awake since 4am this morning and my mind is hyper-active.  Any advice on calming myself down and preparing for the tough time ahead??  I already feel better just typing this because I know there are others out there going through this too........... thank you for any words wisdom!

Sandra x