Member
Posts: 8
Registered: ‎30-10-2018

Re: Refusing treatment!

Hi, I’m new to this!

3 weeks ago I had my left breast removed. Waiting to receive a date for Radiotherapy,after reading the info I am terrified of the side effects it can cause especially to the heart. I am thinking is it worth it.?

i have invasive lobular carcinoma lobular carcinoma insihe Grade2 hormone sensitive.

 Any advice would be very welcome,

 Yellow1

Member
Posts: 6
Registered: ‎08-10-2018

Re: Refusing treatment!

I would hope the oncologist would always have offered you a choice, but indicated his/her preference, with reasons. I think SOME health professionals in oncology assume everyone will want every treatment - after all some women are completely freaked by the diagnosis, even if their tumour has a good prognosis. I imagine, that priorities vary according to age and stage of family life. If I’d been 20 years younger, with dependent children, I’d have considered treatment options differently (but on the other hand, as main breadwinner, I would have had to think about sick leave, the mortgage not yet paid off, and the machinations of my employer (NHS) to sack me “legally”, without pension; I’ve seen it so often!
“I’ve found HRT withdrawal (in a heatwave) so unpleasant that I will refuse letrozole. I said as much to the oncologist before starting RT, but she doesn’t seem to have taken it in. At 66, I am more concerned about the drug increasing the risks of all the things we die of in my family, before I reach the end of 5 years. “Cancer is not the only disease!” I have always joked that my family don’t need to worry about Alzheimer’s, because we never live that long (exaggeration, and some folk get it early) but not everyone inherits the genes for long life - even if the current trend in public health/NHS insinuates “bad behaviour” (aka “lifestyle”) is the only deadly sin. Not being posh enough to have a lifestyle, but just a life, I refuse to be intimidated.
Most people make the best choices for their cancer treatment in the light of knowledge at that time; and NO point in beating yourself up later, if things don’t turn out as expected.
Member
Posts: 3
Registered: ‎18-03-2018

Re: Refusing treatment!

I too refused chemo because I could have terrible SEs and the cancer could still return
Member
Posts: 40
Registered: ‎26-12-2017

Re: Refusing treatment!

I took Letrozole but stopped after a month as awful SE's. I agree that we are having to make choices all the time when we are under great duress and I'm double guessing/ thinking about RADS after starting this week- expected to have 15 sessions. Already my breast feels odd, pains indirectly around ribs and sternum. PREDICT calculator gives 3% more chance of being alive, I wonder if the stress of it all versus the benefits eat that 3% improvement up!…so difficult to PREDICT as they say…its very personal.
Member
Posts: 40
Registered: ‎26-12-2017

Re: Refusing treatment!

hi, pleased to hear you are sure about your decision, I've now started to wonder why bother?My left breast was affected and I'm doing the breath holding at each session to protect my heart…I've been worried about this and how it will affect me long term and if it's worth it in the long run. i'm 60 now and enjoy an active life. I was even offered chemo! but declined as I told my Consultant that if the disease comes back I would need chemo any way, so why put myself through that?!
Member
Posts: 40
Registered: ‎26-12-2017

Re: Refusing treatment!

I had invasive bc stage 1 grade 3 tumour sized 16mm, was given letrozole meds which I took for a month and stopped after awful Se's including feeling suicidal. I'm now on day 4 of rads and feel very toxic and stressed already tbh. I think I'm really sensitive, but wondering if I need to continue. i'm aged 60, diagnosed 5 months ago, and had lumpectomy no nodes involved and clear margins after 2nd op. I feel as if I've had enough of it all!
Member
Posts: 64
Registered: ‎17-01-2018

Re: Refusing treatment!

I wouldn't go for either if in your situation
The % benefit to your life compared to what the Radiotherapy and drugs will do fir you I would not do it
I had the same dilemma when deciding a bout Chemo and refused it .
I am having Radiotherapy but had no intention of taking the hormone blocking drugs due to the side effects and my pre existing long term medical conditions
I looked at the % and my quality of life I believe will be better without
I researched it and spoke to 5 women who had Breast cancer it was a well informed decision.
Good luck with your decision
I am sticking to mine whatever anyone says
Member
Posts: 260
Registered: ‎07-05-2017

Re: Refusing treatment!

Hi geranium

 

Thats very positive thankyou, fingers crossed so far so good.

Member
Posts: 260
Registered: ‎07-05-2017

Re: Refusing treatment!

Hi pecan, i was prescribed it because i deferred my op due to a holiday booked when i was diagnosed, and they didnt want me flying on tamoxofen, as it can cause blood clots, it was a safer option, and maintained it while i was away.

Member
Posts: 12
Registered: ‎21-06-2017

Re: Refusing treatment!

Hi Debbie

 

have taken Tamoxiden for last 3 years and no side effects.   Take every morning at the same time.  Periods completely stopped but have bled a couple of times in between and always ensure I get this checked out asap.  My sister was on Tamoxifen for 9 years with no side effects.  

Member
Posts: 324
Registered: ‎21-07-2017

Re: Refusing treatment!

Debbie, I'm curious as to why you were prescribed letrozole if you were premenopausal.  Did they assume you were post?

Member
Posts: 260
Registered: ‎07-05-2017

Re: Refusing treatment!

Hi pecan,

 

I took letrozole along with zoledex, when i was first diagnosed in may, yes i had few aches and pains, but it was very doable, i have now been switched to tamoxifen, im 53 and and still pre menopausal, im 16 days in, and i cant say ive noticed any changes in my body yet, apart from a heavy period, but im assuming thats because the zoledex has now stopped working and my overies have kicked back in. I dont perticulary want to take it, but i was high er positive, so for me i just think of it as a saftey net.

 

All the best pecan.

 

I would be interested to hear from any other ladies on tamoxofin,  how long were you taking it before you noticed any side effects.

 

Debbie

Member
Posts: 260
Registered: ‎07-05-2017

Re: Refusing treatment!

Hi pecan,

 

I took letsrozole along with zoledex, when i was first diagnosed in may, yes i had few aches and pains, but it was very doable, i have now been switched to tamoxifen, im 53 and and still pre menopausal, im 16 days in, and i cant say ive noticed any changes in my body yet, apart from a heavy period, but im assuming thats because the zoledex has now stopped working and my overies have kicked back in. I dont perticulary want to take it, but i was high er positive, so for me i just think of it as a saftey net.

 

All the best pecan.

 

I would be interested to hear from any other ladies on tamoxofin,  how long were you taking it before you noticed any side effects.

 

Debbie

Member
Posts: 20
Registered: ‎12-08-2016

Re: Refusing treatment!

Hello Ladies. 

 
Firstly,  my apologies to Gail - Panslass. It's almost a year since I've signed in and somehow I missed your post. I'm so sorry to hear the cancer had returned. By now you will have decided what was best for you and I hope you were able to make a decision that you were happy with. I hope things went well for you.
 
Hi Cathy & Mini Mad. I'm sorry that you find yourselves here, however, the support of others going through similar things is invaluable. 
 
Just to give you a quick update. I had a follow up Mammogram in August and all is well. Reading the information from the Prime 2 study gave me the confidence to decline radiotherapy, I have no regrets about that decision. 
 
I did not want to go on Tamoxifen so was prescribes Astrizole, in fact I tried all the 'zoles going! I had a bad stomach with all of them which really affected my lifestyle - couldn't go far from a toilet! sorry TMI. Eventually my breast care nurse said have a break from it all as the percentage of protection was not that high in my case. 
 
It has taken almost a year for me to feel like the 'old me'. One thing that has really helped me is switching to a whole food, plant based, oil free diet - see Dr John McDougall The Starch Solution. I have also lost about a stone in weight on this way of eating! Again I want to emphasise that this an individual decision. Hope this helps you. xxxx
Member
Posts: 324
Registered: ‎21-07-2017

Re: Refusing treatment!

Hi Minimad (I think I must be maximad),

I presume your nodes were clear?

Keep me updated.  I have to decide by Thursday, but at the moment I'm thinking of doing rads but rejecting hormones.

Member
Posts: 68
Registered: ‎16-02-2017

Re: Refusing treatment!

Hi Pecan,

not in the same situation as you but i had triple negative breadt cancer diagnosed in Feb this year.

had surgery in march to remove 2 areas, one positive for cancer, the other looked suspicious so removed anyway.  Also 3 lymph nodes taken.

when i went for the final results, was told that margins where all clear.  Was originally told that chemo would def not be needed but at this appt. they wanted me to have 6 chemo sessions followed by 15 radiotherapies.

i refused the chemotherapy,  didnt feel that there were enough pluses and to many negatives...

so i said NO to chemo but did do the 15 radios, which i finished mid June.

i have my 3 month checkup next week and i need to know that the pains, twinges and tenderness are all part of the recovery process.  Fingers crossed.

hope this may help you but we are all different and handle situations differently.

good luck with your decision.  I will look out for your reply. ☺️

Member
Posts: 324
Registered: ‎21-07-2017

Re: Refusing treatment!

I have just discovered this thread, and am also one who would like to refuse treatment.  I was wondering if any of the ladies who HAVE refused treatment are still on the forum, and willing to give us any updates?  Regrest?  Recurrences? 

 

In my case my tumour was 27mm, grade 3, no node involvement.  I had a lumpectomy followed by a massive infection.  I have several weeks before I have to make the final decision regarding Rads, but will have to decide on Letrozole this week.  I am also questioning the treatment of having hormone treatment when one is recently post menopause.

 

Cathy

Member
Posts: 1
Registered: ‎05-11-2016

Re: Refusing treatment!

Hi 

 

I am new to the forum and looking for advice on radiotherapy treatment for high grade DCIS. 

 

My my journey to date -15 years ago at the age of 35 I was diagnosed with wide spread DCIS in my left breast - I opted for bilateral mastectomy with breast reconstruction at the time and no other treatment was required as it did not involve any lymph nodes. 

 

15 years on I found a very small nodule on my left breast , that I firmly believe has  been there a long time , possible for 15 years ,however my implants had ruptured and I had to have them removed and new ones placed , at the same time the surgeon removed the small grain of rice nodule , this was tested and results came back as DCIS again !! The chances of recurrence I was told was very rare -  the surgeon then removed at least 2 mm clear margins however my breast surgeon suggested as a precaution to have 3 weeks of radiotherapy . On speaking with the oncologist she gave me the pros and cons of radiotherapy . I am not sure if the benefits out way the risks for me at this stage . Has anyone else refused radiotherapy for DCIS ? I know all cases are different but I was hoping someone on here may be able to give me some advice. Thank you Gail 

Member
Posts: 20
Registered: ‎12-08-2016

Re: Refusing treatment!

Hi Jeannie.

 

I'm so glad to hear you've been able to make a decision that you're happy with, and I'm glad to hear you had such good support from your Oncologist and Breast Care Nurse - so unlike my own experience!

 

I'm hoping when someone else comes looking for answers, our posts can maybe point them to some of the latest research.

 

Wishing you all good health

Jane

Member
Posts: 20
Registered: ‎12-08-2016

Re: Refusing treatment!

Thanks Jas58. Both books look interesting - the more information we can have to help us make difficult decisions the better. x