I have no trust, can't understand the benefit

[anotherone2]

Hi to all the incredibly helpful and knowledgeable women on this forum. I’m hoping for a bit of perspective as really struggling at the moment.

ILC ER+ extensive disease in left breast. Single mastectomy and SNB in August, 1 node affected then full ANC (last op 3-4 weeks ago). Was told there was a 57% chance of further lymph node spread but all the remaining 9 they removed were clear. I’m supposed to be starting RT (x15) at end of Oct. I have nerve pain in arm, seroma and lots of painful cording. Having physio which is helping a bit. I am 10 days into Tamoxifen, no major issues yet, probably as am just on the cusp of menopause so I was low energy/insomnia etc well before the cancer bombshell in July this year.

However, I feel almost coerced and very mistrustful of radiotherapy. Basically I only agreed to RT to stop the oncologists talking about chemo (which I flatly refused) and because I feel an obligation to family. Rightly or wrongly, I don’t trust these treatments, or the NHS process. I am phobic about catheters and invasive procedures in general.

To stop myself from chickening out, I signed the RT digital consent form (wasn’t given anything in print) immediately, without reading the side effects. Now that I’ve read them through, I’m absolutely terrified and cannot understand the benefit of RT in my personal situation. I’d be having RT to chest wall and nodes around collarbone, which apparently poses an even greater risk of lymphedema than chest wall only?

For context, I’m thin (just skin and bone in affected area). I have allergies, suffered from asthma in the past, have been told I already have a 1 in 4 risk of lymphedema in my left arm (even before starting RT), and couldn’t even get a good echocardiogram result because “your ribs are in the way”. I am left handed, self employed and unable to work, in serious financial difficulties and terrified of fatigue and long term effects on top of what I already have.

I just don’t know what to do.

The radiographer at planning appt last week refused to scan me because of my concerns. She was really understanding, said the process seems almost too quick, and referred me back to the onco, who I’m seeing again this Thursday.

Underneath all this, I actually believe that the cancer cells will be elsewhere already, and that some of the treatments are worse than the cure. The surgeon also mentioned Abemaciclib, which sounds absolutely horrendous. And ovarian suppression, injections in the stomach etc. All these appointments are destroying my ability to work.

I wasn’t given an MRI because I have claustrophobia, so the surgeon gave me a CT scan instead, which they said was clear. But lobular cancer spreads to unexpected places, doesn’t it?

I have a list of questions which I will try to ask the oncologist on Thurs, but in the meantime just wanted to know if anyone can relate to any of this, and if Tamoxifen does its job and I can tolerate it, why would I need all these other treatments?

Thanks if you got this far.

[sharlou]

I think that decisions about treatment are very much subjective and each of us have to do what we believe is right for us. I belong to the ‘chuck everything humanly possible at it’ school of thought. For me personally, if I’d been told that standing naked on Nelson’s Column for a fortnight would prevent a recurrence, I would have done it - that’s just the way my brain works. I firmly believe that if it does come back one day, I would cope better mentally with feeling that I had done everything within my power to try to prevent it, than I would with the feeling of ‘what if I’d had this or that treatment, would it have come back?’ However, I know lots and lots of people have a vastly different outlook to me.

From a side effects perspective, I kind of see it as a list of possibilities, not definites. I’m currently going through chemo and although it’s no walk in the park, I’m having nowhere near the amount of possible side effects, not even close. I’ll have 15 sessions of radiotherapy after the chemo. I have three relatives who have had radiotherapy over the past year and the only side effect any of them reported was tiredness.

I can only speak to my experience and how I am navigating this minefield of treatments; like I say our treatment plans are very personal to us and we have to make decisions based on what we think is right for us, so whatever you decide will be the right decision for you. Best of luck

[ivy-cat]

I agree with @sharlou that it’s a personal decision. I also think that your medical team would not be suggesting radiotherapy if they did not think it was beneficial. Personally, having had chemotherapy, I am not too concerned about radiotherapy and the side effects but that’s also because my cancer is hard to treat so I will take whatever is offered! It sounds as though they have taken the right approach by referring you back to oncology for more discussion about it. Good luck, whatever you decide to do x

[shade]

Hi Sharlou,
You have given me a belly laugh this afternoon .I am, like yourself, throw everything at my cancer but standing naked in Trafalgar Square! I do understand the sentiment and having gone through node clearance, chemo, radiotherapy and presently on Abemaciclib and letrozole. I can only say I’m here presently recurrence free and enjoying life. Obviously I have some side effects but I know secondary breast cancer would be far worse.
Anotherone2, I do respect the fact that each one of us has to make our own decisions reference treatment. However all the treatments we are offered are given following research trials and have been approved by NICE. Women before us have entered these randomised trials not knowing if they will benefit from the treatment they have been allocated and I feel humbled to be a beneficiary.
Cancer treatment if frightening. I felt I had a loss of control as I entered the foreign world of cancer treatment and the over burdened NHS sometimes doesn’t have the resources to explain in detail every aspect of the treatment we are offered and I have found this forum so useful when I have had gaps in my understanding.

[edp]

Hello. Each treatment offered is unique to your cancer with the aim to cure you. Treatment offered is based on best reach evidence that can aim for that. Some of the treatments are hard and there certainly no medical motive to give you unnecessary intervention. I, like many took everything going as I was pretty young. It was a bumpy year, but I am here healthy many years later knowing I could have not done anymore. However, everyone is different and what you consent to do is your choice. Have those conversations with your oncologist and hopefully they can reassure you of their decision making rationale, and you can choose what you do with after having all the information you need. Best wishes.

[anotherone2]

Thank you so much everyone for taking the time to reply.

I’m still writing the list of questions. The whole treatment thing just feels all wrong, like I’m making things worse. I guess it’s impossible to know what to do for the best.

I will update on Thursday if the oncologist tells me anything useful.

Thanks again

[Curlywurly1]

Hi
Choices are difficult at the best of times but when you are in the breast cancer world even harder

Write down every question or worry and take someone with you

I am assuming you’ve had the predictor score and this tells you the % benefit of radiotherapy?

I was in a similar camp to others last year which was throw everything at this because even if it reoccurs I’ve given my body, myself and my family the potential to live long and well…

But only you can make that decision

Talk, ask, talk and speak to the nurses on here too…once informed move forward

Good luck xx

[JoanneN]

Just to add to the advice already given - make sure that you are informed before you reject anything . I decided to stop hormone therapy because of side effects and underlying health issues and because my particular cancer meant that the risk / benefit ratio of taking them was very small - I even had the support of the Breast surgery team . My Oncologist would have been less happy but she had discharged me by that time. I have had times when I’ve been troubled by my decision though less so now but you need to make sure that any decision you make is one that you can live with.

I didn’t need chemo anyway but I had radiotherapy and although things weren’t great for a month or two after there have been no lasting problems though mine was only 5 treatments and on the right. I would still have had it if they had wanted me to have 15 treatments and it had been on the left.

Sometimes things can instinctively feel wrong even when they’re not - I’m on a medical trial which I signed up to for the wrong reasons , it’s hardly a disaster but the trial procedure didn’t go well and wish I’d just gone down the conventional surgery pathway as it would have saved me a lot of anxiety time and money.

It seems like you have had it quite tough with both a seroma and cording and I can understand that as well as any other concerns you don’t want to do anything to exacerbate those . I would suggest speaking to your Oncologist about the time scale for any upcoming radiotherapy and check with the Dept itself as sometimes the Consultants really do think the wait is less than it actually is and the longer the wait the greater the chance that your seroma and cording will resolve beforehand. I would also discuss with your BCN / Breast Consultant and / or the Nurses on the helpline about your seroma / cording in relation to radiotherapy .

Best of luck whatever you decide xx