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Turning Chemo down - not looking back??? HER2 Positive..

10 REPLIES 10
skinnyminx
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hi LottieLou80

 

As I'm sure you realise, except in very specific circumstances, as an adult the decision about whether or not to put oneself forward for any medical treatment lies with the patient.  Whether it's self-administering a paracetomol for a headache right through to major surgery or heavy duty treatment such as chemo. 

 

We have to give formal consent to any medical procedure carried out by a third party I read comments on various threads on this forum where people refer to their treatment by saying "I have no choice" and I feel like screaming "YES YOU DO".

 

As people have said in their answers on this thread, it is your decision.  Some people have cancer and choose to have no treatment or to have not all the treatment(s) recommended by doctors.  I know of several people in these categories and yes, these particular people have all looked back and, depending on the person/circumstances, that look back was with contentment, resignation or regret - and doubtless a whole host of other emotions to which I am not/was not party.   

 

Doctors make recommendations from a clinical perspective, friends and family may chip in with their views too and may use different tactics including emotional blackmail. 

 

You are exercising your right to choose.  Some people want masses of information before making decisons, others are more comfortable with less information before deciding what way forward seems right for them.  Of course, people also have varying attitudes to risk, some are very risk averse others are not and where we are on this spectrum will also affect our decision-making process. 

 

Whatever you decide, I hope you receive the respect you deserve - from the medical team, your friends and relatives and posters on this forum.  No-one can tell you what to do - your question to this forum was not "should I have chemo?" it was "is there anyone who has decided against Chemo out there and never looked back??".  I tend to think that the anyone who decided against chemo and never looked back is very unlikely to be on this forum but I hope at least that the, albeit second-hand, experiences I've mentioned above about people I know who have not had some/all recommended treatment(s) for cancer are of some use.    

 

I think you had a consultation with the doctor yesterday  so I hope that was useful. 

 

Very best wishes.

busyanne
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Lottielou you  must do what you think is best for you.  However please dont be put off with tales of bad experiences etc.  We all react differently and we are all afraid of the dreaded chemo.  As others have said its not as bad as you think it is going to be and personally if it is going to help keep bc at bay then for me its a no brainer.  I had to have all four, surgery, (including re excision) chemo, radiation and herceptin.  I am nearly finished my treatment and yes I still feel fearful for the future I know that I have done everything possible to stop the bc coming back.  But as everyone has said it is up to you but make sure you talk it through througly with your medical team.  Best regards for the future.

Jaye
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hi Lottie

 

I hope I am not speaking out of turn but I feel your loss of your beloved dog and your grief surrounding that is a lot to do with your decision. 

 

You have been through such a lot this year with your BC and to loose your dog has been the final straw and has sent you into depression.   I have had dogs most of my life and I really understand how the loss can affect you - I have been there with my last dog a number of years ago, the grief was awful and I couldn't get over it for a long time.   But... to add BC to that is just too much to take.

 

We have the choice and if you feel that not having chemo is right for you then that is a decision for you to make and no one else but you are young, younger than my daughter and if chemo is going to help to rid you of this dreadful BC then perhaps you need to talk to someone about it all.

 

Jaye x

 

 

scattyfox
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hi Lottielou i was like you i just kept crying all the time. My surgery didnt heal well and looking back now i can see i was heading towards despression, a commonbside affect. I cried at eveey appointment with every dr and the thought of losing my hair was hesrtbreaking. Macmillan supported me and never made me.feel bad listenibg to my concerns until i was able to think semiproperly again. Im now through cycle 2 and although not pleasant its not as bad as i envisengened. I have a great support network on here and although not happy about my hair i have fab hats and a halo hairpiece which is very realistic. Whatever you choose to do it is your choice but please speak to someone on the helpline to support you and your choices and good luck with it all xxx
LottieLou80
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hello,

 

Thank you all for getting on touch. I think due to my age that could be the reason they are pushing me so hard to have it (33) but I have decided against it.

 

My heart and head both say no and ulitimatley I have to go through this (the actual chemo) not them or friends/ family 

 

If I hadn't have lost my beloved dog it might have been a bit different but you can never say can you I guess, he was my rock so my mind just isn't in a great place now so I just personally don't see myself getting through this treatment. I was always such a strong person before this year started, isn't it amazing how things change in just a few months.

 

I'm now looking forward to seeing them tomorrow and saying no, it feels abmassive weight off my shoulders. I guess its just hard because you don't see many people turn it down so its just feels strange to say 'no thanks, not for me' when so many say 'yes'. When I get home I'm booking a cottage in Cornwall to stay in for a couple of days for my birthday in Dec with some old college friends, its giving me something to plan for and be excitied about, I think we all deserve a treat or two

 

Thanks again

 

x

kitten_mad
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Lottielou - I have sent you a private message. You can access it at the top of your page. Hope it helps

K M

Deb28
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hi LottieLou80,

I was diagnosed the day before NYE and had a mastectomy and reconstruction on Jan 28th. I had three tiny cancerous lesions so had no other choice. I had a micromet in my sentinel lymph node and had 18 lymph nodes removed which were all clear. I researched quite a lot and read that some hospitals don't give chemo if the lymph nodes were clear even though I had a micromet in the sentinel lymph node, they take it away and basically that's that. I went for my results and chemo was a recommendation due to my age (45). My consultant said that it was ultimately my decision. I was more concerned about the side effects than losing my hair. I am having 6 fec-d and now only have two treatments to go. I can honestly say that no, it's not great but it's been better than I expected and it's 'doable'. I haven't suffered with many side effects and recommend healthy eating and generally following basic rules...don't mix in crowds etc.As for the hair loss...that really hasn't bothered me as I know it'll grow back and my wig is fab and people have been amazed when they have found out it's a wig. The way my consultant explained it to me was 'you scrub and scrub at your kitchen sink, you know it's clean but you always squirt bleach down to be sure'...I find that this really summed it up for me...I agreed to have the chemo and think i've given my self the best chance possible. It's a few weeks out of your life that realistically can be adding years to your life. I hope this helps in some way but sure whatever the decision, it'll be the right one for you. xx

rosie14
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hi Lottie you have been through a great deal and the thought of going through chemo understandably fills you with dread. I didn't have a choice and had to start with chemo and now am just over half way I am due to finish on July 10th with surgery to follow and then Herceptin.I would give the helpline a ring and speak to someone about your fears and feelings they have left you a message on this board. I think you will find them extremely helpful and they will offer you a balanced view. Good luck and don't beat yourself up about it! Do let us know how you get on. xx
Jackie09
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Hi Lottielou

Just to say that I'm having chemo at then moment, but share each and everyone of your concerns and fears. I hate hospitals, blood tests, canulas - you name it! But somehow, and I'm not sure how, I find the strength to keep turning up to all my appointments and get through them - and I couldn't say how, but always shed tears. I read lots and lots before I started - some good and some bad. None of them really made me feel better as all the doctors tell you, everyone reacts differently. I can be honest and say, the reality is definitely not as bad as imagined. For me, you have overcome the most terrifying part - having your operation, so I think you are way braver than me already! As for the hair part - it was tough for me. I couldn't look at myself for a week after I had it shaved - but now I don't feel so bad. I have a wig that I like, and that's good enough for the moment.
Ultimately you have to do what feels right for you - and no-one knows what that is apart from you. I just wanted to come on and say - if it's fear that's stopping you from having chemo, there is lots if support out there - e.g I'm having behavioural support re my fear of needles to help me overcome it to help you on this horrible journey, should you wish to start it. X x
Janet_BCC
Member

Re: Turning Chemo down - not looking back??? HER2 Positive..

Dear LottieLou80

 

I'm sorry you're in such a difficult place at the moment.

 

It might help to give our helpline a call to talk over how you are feeling.  They'll be able to offer you practical information and emotional support.  They're open now (9-5 on weekdays and 10-2 on Saturdays).  The number is 0808 800 6000.

 

Take care

 

Very best wishes

 

Janet

BCC Moderator

LottieLou80
Member

Turning Chemo down - not looking back??? HER2 Positive..

Hello

 

I literally can't stop crying and stressing myself out about it. I was diagniosed on NYE, I have since had a double mast and immediate reconstruction (feb 4th) since the operation I have lost my job through redundancy (nothing to do with my cancer) and I had to have my dog put to sleep after being with me for 11 years (he was my rock during my op). I have never felt so low in my whole life, I used to be such a different person but now I'm a wreck. The thought of losing my hair after loosing everything else in the last 4months feels me with dread, I made the decsion NOT to have chemo and I was happy with that but I feel guilty because everyone tells me I should have it. It has gone past the 12 weeks now where Chemo is effective so I think to myself whats the point in putting myself through it all if its not going to work. Its only because I have been told to have the Herceptin that I keep telling myself I should have it. 

 

I'm HER2 Positive, Grade 3 but my nodes were clear but I also carry a TP53 gene which is a cancer causing Gene. My mum has just had a mastectomy 3 weeks after me (she has had cancer 3 times and also sarcoma once)

 

The word Chemo makes me feel sick, walking to the hospital for appointments I sweat, clam up, turn into a horrible nasty person, getting an appointment in the post makes me cry for the rest of the day.

 

I meant to be having the Chemo talk and the first session on Wednesday and I just don't know what to do

 

Is there anyone who has decided against Chemo out there and never looked back??

 

Thanks for reading xx