2 cycles of FEC completed, but I dont want to carry on :(

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Hello everyone. Well I am now on day 12 after my second FEC cycle. But I am seriously thinking about not having anymore chemo. I honestly feel like it is doing me more harm than good. This cycle has been better though, as in I haven’t been sick at all, and the nausea has been minimal. The thing I am really struggling with though is the constant worry about catching an infection. I am petrified! I was in hospital for 9 days during my first cycle, due to having an on going chest infection, and I am so worried about being ill again. At the moment all 3 of my Daughters are poorly with coughs, colds, and sore throats, and I am constantly telling them to not cough into their hands, etc, for fear of them spreading their germs. I feel like a broken record telling them to wash their hands and use anti bacterial hand wash all the time. They are all being affected by my treatment, they are worried, upset and stressed, and I cant deal with that, I feel like its destroying my family :frowning: My Husband is absolutely amazing, so supportive, but I know he is feeling the strain too. You might think why I am so scared about infection, well its because I live an hour away from the hospital I am being treated at, so getting help quickly is difficult. My local hospital could help me if needed, but the A&E department is closed over night!

I chose to have chemo, even though my Oncologist said it only offered a 1% benefit. The reason I went ahead is cancer was found in my sentinal node, so I was worried about any cells that could be lurking elsewhere. My lump, which was a 12mm Grade 1, ER+ was removed with a very good clear margin, and no more cancer was found in the remaining 25 nodes that were removed. My Oncotype result was 20, so in the low intermediate area, meaning that it isnt clear if chemo would be beneficial.

Another thing that chemo has left me with is my body is constantly shaking, like a vibration, and when I walk it feels like i’m on a trampoline or bouncy castle. I’ve read that this can be due to nervous system damage. I also have tenderness in my chest bones, which was originally thought to have been caused by my chest infection, but now thats cleared up the tenderness is still there. I am obviously worried about this, and I really want to have an MRI scan to check my whole body, i’m even prepared to pay for it, if the hospital say I cant have one. I want to know if there is any chance the cancer could be somewhere else. I want to stop chemo and go straight onto radiotherapy and hormone therapy, which my Husband wants me to do too, as he feels I cant mentally cope with anymore chemo, knowing that potentially I am damaging a cancer free body, and I agree with him. I really dont know what to do, I just want to feel normal again :frowning: Sorry for the long post!

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Hi Maidenmummy,

These things can be such a dilemma & so sorry to hear you have had a rough time with infection.

I did not have chemo, 7mm grade 2, er+, no node involvement & clear margins, for me it was mentioned in passing, but was never really on the cards, so after surgery, I went straight to rads & tamoxifen. 

It’s obviously your decision & you will do what’s best for you especially as it sounds marginal & of course, your team will advise.

Very best wishes with it all. 

ann x

 

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Hello - Grade 1 with only 1 out of 25 nodes affected does on the face of it sound comparatively low risk and you would be unlikely/unlucky to have any metastasis elsewhere. I would make (demand) an urgent appt with your Onc and ask (1) is there any significant risk if you stop now and (2) are there any other chemo options such as EC (rather than FEC), lowering the dosage etc. which would make the treatment more manageable if you want to carry on. I also feel and empathise with your anxiety. The chemo messes with your emotions as well as your physical body and this type of fear and stress is what it does to you I’m afraid, along with low moods. Doing things that make you happy is key to surviving this chemical onslaught.  Focus on doing something for yourself as a treat.  It may also help to look into (ask your GP or consultant for a referral for) counselling to help cope with the feelings of guilt you seem to be experiencing in seeing your family try to cope with your illness and treatment.  I have just started the hormone therapy and I have to tell you that that also has physical and mental side effects - it seems all the treatments do.  I also long to be my old self but I am not sure whether that is possible.  On the plus side it sounds like you have an excellent prognosis and a loving family so hang in there! Important to do whatever you feel is right for you. 

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Awee I feel your pain Hun, I am feeling a little hesitant at my 4 th cycle in over a weeks time, as I have had a tough time this time, so much pain and tiredness . One thing that is in my favour is my immune system if you would like to know more of what I do to keep my white blood cell count st 7.1 just message me , I’ve been asking advice on the pains and tiredness but if I can help with immune problems I’m willing to share what vast quantise of potions and tablets I take . Bear in mind people on chemo their white blood count is normally about 3 . Hope to chat soon xx

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Thank you so much ladies, for all your replies, and advice. :slight_smile: I need to make my decision today about whether to stop or carry on, but i’m finding it extremely difficult. I want to stop, but I’m so scared its the wrong decision, but I honestly cant see myself being able to cope with any more cycles.

 

I spoke to my Oncologist a couple of days ago, and she said again that normally they advise people in my position to have chemo if they have 4 or more nodes involved, and obviously I only had 1. She said its unlikely that the cancer would have spread from that 1 node, and if it had I would be extremely unlucky! I cant help thinking ‘what if’ it has spread though, there is just no way of knowing right now.

 

She also mentioned that as well as radiotherapy and hormone tablets, they could also give me a monthly injection to stop my ovaries producing oestrogen. In my case these treatments should be pretty effective.

 

One thing I have asked for is a CT scan, as I am getting pain, a slight burning sensation, and a heavy feeling in my chest bones. Not sure if this is connected to my 2 previous operations though, as its only been 3 months since my last one. She said she wasnt sure if I would be allowed one though, as it may be deemed unnecessary, but she’s put a request in for it anyway, so fingers crossed its approved.

 

I am defintely so confused right now!

 

Lisa

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You have described exactly how I’ve been feeling since my first FecT 3 weeks ago. My youngest daughter hasn’t been well and is scared to come near me every time she feels the slightest bit unwell. I hate how it has affected my children but they want me to have the chemo and I feel if I stopped I would be letting them down. In the end I spoke to my breast cancer nurse and she really helped me sort my thoughts out, could you chat with yours? My Oncologist is lovely but she is really just for settling a treatment plan and prescribing the chemo. So when I had my appointment with her my breast nurse came with me and we discussed all my concerns and some ideas the breast nurse had. I’m having my 2nd Fec on Monday but I have had a 20% reduction of chemo drugs as apparently this can make a big difference I have also joined my local young women’s breast cancer group and that has made the biggest difference. People seeing the same dr as me going to the same hospital as me and feeling all the same emotions and symptoms as me. I have a real fear of illness and infection so I do understand how you feel and I think knowing only one node was affected is not always a good thing as I had 8 removed with a tiny bit of cancer in one and I wonder all the time if I need to be poisoning my body. My cancer was removed with clear margins too but was grade 3. I just imagine how in a year, 5 years then 10 years I will feel about the decisions I make now. What if I do all this and it comes back anyway? My breast nurse said at least you will know you did everything you could at the time and that one statement is what is making me do this again. I don’t know how I’m going to feel after this one and I’m really scared which I know will make me feel worse but I feel like I have taken control a bit by asking for a dose reduction and I have changed my day from Friday to Monday as my chemo unit is only open Monday to Friday 8am-6pm and I want them on hand this time right from the first morning. I also have the vibration feeling you mention it feels like my blood is vibrating and rushing round my body because it is, this is your stress response system controlled by the primitive part of your brain, fight flight response. You’re brain remembers the first round of chemo and doesn’t like it so panics and floods you with adrenaline, empties your bowels, sends blood to muscles and doing that worked as far as the caveman brain is concerned because you survived so after round 2 it did it again to keep you alive because that’s its job you can let it know it’s okay your safe and don’t need to panic by activating the intelligent brain by doing something logical. Colouring in is going to be mine on Tuesday if I can manage it choosing colours and thinking why I’m choosing them. Writing stuff down anything I can see or hear when we use the logic brain the cave woman sleeps. I learnt all this from my counsellor at the hospital which my breast nurse arranged really quickly for me. Maybe you need an extra week to think things through to feel better for longer. I know I have waffled but I hope I have helped. Lots and lots of love to you xxxx

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Hi ladies I had started my chemo lasft April and was originally started on fec to be given every 3 weeks the first dose I ended up in hospital for 6 days as my neutrofils were 0 the 2nd dose I was the same in hospital back on antibiotics for 11 days, had an appointment with my oncologist just after discharge with the intent of telling him I was having to more but to my surprise he a a new plan with different chemo all planned for me given weekly over 12 weeks and I felt so grateful because it didn’t make me feel so ill I actually could go about as if I was t on any at all maybe worth talking to your oncologist to see if they could offer something different I had a small lump removed but my nodes were all clear , hope you feel better x

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Hi maidenmummy hope your doing okay and you decided what to do , hope you got your Mri to put you at ease a bit it’s not easy every pain I get I think the worst stay strong and I’m thinking of you x❤️

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Hello ladies. Once again, thank you very much for your replies, and support :slight_smile:

 

I have decided to not carry on with chemo. Its been a very difficult decision, but I feel its the right one for me, and I have the support of my Oncologist and breast care nurse, and obviously my family.

 

I met with my radiotherapy Dr and nurse yesterday, and will be starting rads in about a months time. They also started me on monthly Zoladex injections, and will be asking my GP to prescribe Tamoxifen, to start asap too.

 

I will also be having a CT scan, to investigate the pain i’m getting in my chest wall, unfortunetly this isnt until April 20th, so I will be very anxious in the meantime, although my Dr’s tried to reassure me that its very unlikely they will find anything wrong. I have also found a lump in my good breast, which will be checked on April 3rd, but again, my Oncologist had a feel of it yesterday, and thinks I just have a lumpy breast, and its nothing suspicious, but obviously its best to check it properly. Still, I will be worrying myself silly over it all, until I have had it all checked!

 

 

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Hi maidenmummy I can sympathise with you I to was strafed on fec and ended up in hospital twice but got mine changed and it was fine, you have to do what’s best for you and you obviously have the support from your oncologist to stop so that’s good , I hope you don’t worry to much they surely would have given you earlier appointments if they thought you needed it , I do hope you are ok and all the luck in the world with your scan xx

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Hi maidenmummy, the waiting on things to happen is the worst it’s torture, I hope you manage to get through to them on phone , maybe try your doctor surely they may know of how the private system works , where I am people criticise the hospital I attended but I have the upmost gratitude for them as I found things happened really fast , I wish you all the luck in the world and hope you manage to get it done quicker xx