New here, too terrified of treatment to accept it

I have  finished 15 session of radiotherapy a week ago after a mastectomy It was not pleasant but quite  doable and I have some side effects.  I have an itchy rash, a sore throat for a few days and I am more tired than usual but am well able to look after myself and am gradually getting back to normal activities. I am 86 so hope I haven't aged 10 years and in fact still feel as I did before(about 70) I think you can see the worst scenarios on the Internet. Just try and keep positive, so many are back to normal life even after the worst treatments. It is always going to be at the back of our minds but I am so thankful that there is such good treatment available and everyone seems to try to do the best for each individual person. Thinking of you. X

Hi there, I can share my experience, but as you know everyone is unique with a unique breast cancer profile. I was diagnosed with a 25mm lobular cancer in January. The recommended treatment plan was lumpectomy followed by radiotherapy and Letrozole for five years. Roll on to my oncology appointment. The oncologist then gave me the results of the recently published results of the Prime 11 clinical trial research, which meant that I had a choice as to whether to have radiotherapy or not. The criteria was very specific: tumour 30mm or less, grade 2 or less, age over 65, ER & PR receptive (I was 8 for both), HER 2 negative, Clear margins, node negative, and prepared to take Letrozole for five years. Also I had no lympho-vascular involvement. For my particular profile there was no difference between the ten year overall survival rate with or without radiotherapy. However, based on the research, there was a 9.5% chance of recurrence without radiotherapy and only a 0.5% chance of recurrence with radiotherapy. He said I had to weigh up the potential side-effects of radiotherapy (which he went through fairly thoroughly) against the risk of recurrence. He would not be drawn to say which choice he would recommend. He said it had to be my choice, what was important to me. He also said he could not say what he would do faced with the same choice, and added "and I'm not 71." I'm not sure if this helps, but I thought I would share this with you as I think we are all so individual, with specific tumours, and it is all so very nuanced. Sending love and best wishes. xx

As already indicated, we’re all different and we all respond differently to our diagnoses and treatment options. It follows that we also react differently to actual treatment. 

I can only speak to my experience. Firstly, I should say I’m terrified of hospitals and doctors so I started off feeling scared of everything from being able to find the consulting room to the actual treatment. 

I had radiotherapy as part of my treatment and, honestly, it wasn’t anywhere near as bad as I feared. The breath hold part was tricky but I’d practised in advance. The “tattoos” were minuscule compared to what I expected and the after effects were little more than a patch of sunburn and 24 hours of brain fog. I’m still a bit tired but that might just be a combination of stress and all the travelling and from appointments. 

I wouldn’t persuade anyone one way or the other. I hadn’t heard of the aging thing but you might want to look at the leaflets inside OTC drugs and check out the long list of side effects. I’d guess the vast majority of us don’t have any of those things. 

Good luck whatever you decide. 

HiAngel C,

I have same diagnosis as you except mine grade 3. I was to have radiotherapy however given the grade 3 I'm having 4 cycles of chemo to hopefully kill off any potential sleeping cells.

I want treatment options as this cancer can reoccur. The  treatment choices need to be yours based on what you believe.

It sounds like you've done your research but that's not always updated in a timeous manner.

Something I find on this page is listening to the experience of individuals who have been through it and have had the various treatments and outcome.

I'm sure you'll make the right choice for you. Good luck with your recovery xxx

Hi Angel C , sorry you’re having to make this difficult decision. Lovely replies already from the fine folks here. Your post resonates with me as I hadn’t realised till after my lumpectomy that a mastectomy would have meant no radiotherapy. I felt at that point that, had I had the choice at the start (I just went along with my treatment plan - lumpectomy, hormone therapy and radiotherapy), I’d rather have gone for a mastectomy. But when I asked the oncologist whether that was still an option (post op) he said that it would be regarded as over treatment. So that was that! I got my first prescription for Anastrozole and signed up for radiotherapy. I didn’t love any of it but as someone above has mentioned, the ‘statistics’ usually refer to survival but I want to do all I can to reduce my risk of recurrence. 
Good luck with your decision! I think you can only look at all the reliable information and do what you feel is best for you. Not easy. Love and hugs, HFxx

• I don’t feel I was given a real choice either. I was strongly steered towards lumpectomy and having to wait so much longer for mastectomy (it would have been a total of 7 months since my referral) didn’t feel acceptable to me. How do you feel now that you’re through the treatment? Was it as bad as you thought it  was going to be? 

I fulfil all those criteria except that I’m only 52 so this isn’t going to be an option for me. I’m also extremely reluctant to take hormone blockers. I’m having terrible menopause symptoms as it is and don’t want to make that even worse. I’m so fed up with trying to make this decision. Weighing everything up feels impossible and I can see no good way through this. 

We are all different, but since I commenced Letrozole 8 weeks ago I can honestly say, that so far, I have experienced zero side-effects. I'm sticking to one brand and am travelling hopefully. Sending love and best wishes xx  

Hi, sorry you find yourself in the club nobody wants to join and the predicament of choice.  I had two weeks of intense radiotherapy and I have to say other than feeling tired and having to turn up for 5 consecutive days twice, the radiotherapy had no impact on me.  I would have no fear of it.    I asked the surgeon if the risk of cancer returning is lessened if I had a mastectomy and he said no.  The only risk was I may need further surgery if margins weren’t clear.  I   had two surgeries before margins were clear, 10 days of radiotherapy and on Anatrazole for 5 years.  One other thing to consider if you like holidays.  When looking for travel insurance one of the questions, if I remember correctly is “have you been offered treatment but turned it down”.  It is your choice but personally I went along with what my surgeon and oncologist suggested. 

Hi Angel C

When i was initially diagnosed, i was given the choice of a mastectomy or a lumpectomy plus radiotherapy. I was told that radiotherapy after a lumpectomy gave as  successful an outcome as having a mastectomy. I chose to have the lumpectomy so the radiotherapy was always going to be part of my treatment plan.

I  had 5 days of radiotherapy which to be honest was a breeze. The time you are in the room is roughly 15 minutes and most of that is getting ready and in position  for treatment. The treatment itself is only a few minutes. I know that everyone is different but the worst part of it for me was the travelling and waiting around.

I have just this week had my follow up appointment, when I told them that my skin was darker, my breast felt warm compared to my other breast, sometimes it feels heavy and I feel tired, I was told that's completely normal. Drink lots of water and moisturise the treated area.

The predict tool tells you survival rates, not reoccurrence which is something to bear in mind. My oncologist last week told me that they are still using the older predict results and not the most recent ones which are not perceived to be as accurate.

Good luck with making your decision. All the   best D. D