Stopping radiotherapy after beginning it

Hello, I’ve had three sessions of radiotherapy following a WLE. Emotionally, I am finding it intolerable and have hit an all time low. I had clear margins and the tunour (10mm) was excised at all margins. The tunour was EST+ and PG+ and Her-. 0/2 lymph nodes also, no vasuclar spread and no necrosis. i have done reams and reams of research and have had second opinions. Studies show that radiotherapy is not statistically significant with my type of cancer when it involves post-menopausal women. I am 39, however. i feel that my spirit is ebbing away with the radiotherapy and am wondering if anyone has ever stopped having it after beginning it? I am seeing my oncologist tomorrow to discuss this. I have been told that i risk not less than a 20% chance of recurrennce at 10 years with NO further treatment. Any comments appreciated (although I would appreciate a balanced view).

Hi Mazonga
Sorry to hear you’re having doubts about the rads again after you went to so much trouble to psyche yourself up to start them in the first place. What is it in particular that you’re finding intolerable about it?
I sympathise with you so much, I really disliked going through rads myself, although other people seem to thrive on chatting with others in the waiting room, etc, I hated the whole thing and couldn’t wait to finish.
Sarah x

Hi Mazonga, I am waiting for a WLE and SNB for a 1cm tubular cancer with some DCIS round it. The cancer is supposed to be slow growing and non aggressive (note I say supposed as two weeks ago I was told after ultrasound they didn’t think I had anything to worry about. I have everything crossed but I’m scaring myself to bits with what ifs). Anyhow the point of my ramblings is that if, please god, there are clear margins and no lymph o vascular involvement (big if) then I’ve seen some people saying radiotherapy (which they’ve said I need for 6 weeks plus tamoxifen for 5 years, is overtreating.

My main goal is to survive. I am a single mother of young teenage kids. I also hate the thought of radiotherapy because it has so many side effects. If I survive as a single woman a lopsided shrunken breast and side effects and possible lymphodoema horrify me. I asked did I really need radiotherapy and was told that if I had WLE I would routinely have radiotherapy and that this type of cancer is also e+ so hormone therapy too. I guess me decision, like yours is once I know what histology says.

But there’s the thing. If I believed what I read about this cancer I might take the chance and say no. If there is a recurrence then it mx and chemo anyway. And maybe if it was just me I might take that chance. I’m too much of a coward though. Yes, I’m right with you. I hate the thought. Everything from the little tattoos to the discomfort to the toxic nature, side effects and what I’ll look like appals me, but I guess the thought of a recurrence appals me more.

I think you are very brave and smart to have found out so much, researched, debated, discussed.
In the end you are the only one who knows what is the right choice for you. We all have slightly different dx,
are different ages and know what worries us most.

You got yourself there and if you only do some of the sessions rather than all, I guess that gives you more protection than doing none? I guess, but I’m pretty ignorant.

Whatever your decision, I admire your guts to even think of challenging a treatment plan. I think I’ll rebel mildly by taking every homeopathic, herbal and alternative way to reduce the impact of rads but take it a day, week at a time until this horrible thing is behind me.

Good luck whatever you decide xx

Thanks to both of you for your responses. Cheshirecheese, i feel very strongly that my bc (and this relates to the type it was etc) came about as a result of my not caring for myself, worrying too much about other people, and living a very toxic life physically and emotionally. for the previous 4 years, i didnt care much whether I lived or died and lived my life accordingly. i’m not saying all bc is the result of this, i know it can be random. however, the diagnosis forced me to stop and really take care of myself. i am now in such adifferent place. Because i have been told,including by tyhe radiotherapy nurse, that rads “may well be overtreating you”, my heart is just not in it. Howver, I feel terrifeid of the bc coming back. i have no support during this 4 month process, aside from friends ringing up regularly - physical contact with people has been fleeting and rare. maybe this is makinf it harder for me. the rads just feel like they are burning me to death, I feel such terror when i am on that machine, it just does not feel good t me. but as i am also not planning on taking tamoxifen, (there is evidence to show it just puts cancer cells to sleep, hence the recurrence rates being strongest for my EST+ at 5 years plus - my oncologists have confirmed this. I have had 3 sessions, so dont know if this means that i would be unable to have rads again, should i have a recurrence. i just dont know what to do. i canceled the rads today and am meeting the oncologist tomoro. my bc nurse has referred me to the hospital psychiatrist because of the unnecessary anxiety i am having over rads! i broke down in the hospital yesterday.
Mary Grace, i am wondering who you have heard say rads is overtreatment with that histology? My age is a factor apparently, being 39, i am at a higher risk of recurrence, my oncologsit says the reasons for this are not clear. but a lot of younger women have more aggressive cancers i think? I have advice abvout complementary treatments - lots! if you need it x

I’ll take you up on the complementary therapy advice! I was reading everything I could find on tubular cancers from every site I could find. There are various US sites where people were saying their once had said this but when I mentioned it the breast care nurse said they would strongly advise me to have rads. I am 47 and ultrasound did not suggest vascular or lymph involvement but nothing would surprise me now. Is it the actual process of having radiotherapy or the medical side which is scaring you most? If it’s the first they could maybe prescribe you something for the anxiety just for these few weeks? I know its more drugs but if you do think you should have rads and want to keep on, maybe there is something they could give you? If it burns maybe you can associate that with burning nasty cancer cells. Whatever you decide, I have fingers and toes crossed it works for you xx

I too was 39 when I was diagnosed and I have had radiotherapy several times. I was a bit scared too at first but I think it helped me when I thought that this raidiotherapy was zapping the bu**ers to high heaven!
I am now 60 going on 61. I have had bone mets for 12 years and 22 years from original diagnosis. Perhaps instead of talking to the radiotherapist you could arrange an appointment with you Oncologist OR/and your Breast Care Nurse and tell them exactly how you feel and what your worries are. That is what they are there for.
I do agree that a mild sedative may help with the anxiety. I recently had an MRI scan and hate confined spaces but I took some sedadives before I went in and it just took the edge off. I took one when I left the house and another just before I went in. I was still fully awake but closed my eyes and got on with it ( not an easy task as I was in the machine for an hour as they were doing my spine and my pelvis). But meantime we are here for you if you need to offload/scream/shout. Hugs, love Val

Mazonga, I just want to send you a huge hug, you sound so desperate and confused, I’ve just recently finished my rads treatment and hated every minute, but as a 36 yr old mum of 2 boys I would do anything to prevent the bc recurring, my onc also said he wouldn’t be bothered if I said I wanted no further treatment, as I have a low risk of recurance, well I was a low risk of getting bc in the first place! If it does come back at least I tried everything that was offered to me.

I hope you find the strength to carry on, my skin held up really well, its still tanned looking but generally good. They tell you of all se, just in case, but many people don’t get any, everyone is different and reacts differently to treatment .

I’ll be thinking of you today, whatever decision you make, come back and let us know. X

Hi Mazonga,

Don’t beat yourself up about your life style. I did all the ‘right’ things but diagnosed with small, no nodes, but grade 3, clear margins not quite clear and vascular invasion, only 2/8 E+, so chemo and the lot.

Before you decide. Think how you would feel if you had a recurrence and you didn’t finish the course - if you can live with that thought then maybe it is the right course for you to give up. I would hate you to look back in the future and say ‘I wish I had had all my rads’.
Hope you reach a decision soon, not being able to decide always causes some mental torment.

Thank you so much everyone and I’m sorry to hear of what you’ev dealt with. The strenght radiates from your words, even though I guess you don’t always feel positive. i’ve read in clinical studies that my type of cancer (EST and PG+ HER-) is most closely correltated with alcohol and I was having alcohol misuse counselling before I got the diagnosis (in this, i’m not blaming lifestyle for most cancers and all that stuff). I have transformed my life since then, and now feel like I’m turning on myself again. I’m wondering crazy cat lady if you’d mind teling me your age and what kind of cancer you had? That way, if it’s similar to mine, I can take hope that someone also told you this information. Also, if anyone has had any long-term side effects from the rads? That is what is making me feel like i’m turning on myself again. The idea of the breast being permanently sore, permanently shrunk and hard. Is this the usual way? xxx

Hi mazonga, I’m 36, my bc was invasive bc 12mm grade 2 ,0/4 lymph node involvement, oestrogen +, clear margins, and that’s all I know, wasn’t told anything else, but onc said my results were really good (doesn’t stop the worrying though).

My breast is still slightly swollen, but I only finished rads 3 weeks ago, the rads section on this site is usually quiet, so can only take it that most people have had no long term problems and have moved away from the forums.

Try not to ‘blame’ yourself for getting bc, I just consider myself to have been extremely unlucky ,

Take care x

Mazonga-I have made the decision today to have radiotherapy instead of mastectomy!As soon as I left the consultants room I had doubts and by the time I got to work I was seriously considering ringing them to say I’d changed my mind, however I decided instead to ring the radiotherapy department of ST.James where I would be having the treatment. I spoke to a lovely lady who was a Macmillan radiotherapist, she told me some of the long term side effects no longer occur due to the treatment being far more accurate and that breast shrinkage is also not particularly common, only a small area of the lung gets the radiation and the only way of knowing that you’ve had it is if you had an x.ray of your lung, otherwise you shoul’nt be affected at all. We’re going for a look round the department on Tuesday as they’re having an open day. I still feel realy sick with anxiety and wonder if a mastectomy would have been less of a long term worry, but I did take on board what a couple of the ladies on this forum suggested that you should go for the least invasive treatment available and not to choose mastectomy just because of being afraid of radiotherapy.
I so understand your anxieties,take advise from those that know but remember it won’t go on for ever if you can just get through these next few weeks.TAKE CARE

Just been reading through this thread and felt had to comment on some of the comments made.

I finished my radiotherpay (21 sessions) nearly 3 weeks ago. I also had hormone positive cancer so am taking Tamoxifen.

Like most women despite a ‘good’ prognosis and not needing chemo I still am very concerned about the future and still harbour a lot of “why me” in getting BC in the first place and have found this site a great source of support. However, I have also read some posts which do nothing but make the mental state of BC sufferers worse.

My tumour was hormone positive and ductal and as I am partial to a glass of white wine was really concerned to read the comments relating alcohol to hormone positive BC.

I did a lot of research before and during my treatment and I have never found or been told that there is such a direct link, despite asking questions. The link below (and other sites I have now found after specifically invstigating)states that this perceived risk from studies undertaken relates only to lobular cancer and not ductal.

We are all worried and need to vent an dquestion but I think this is a prime example of chinese whispers in a negative way and maybe when posting, people think carefully about how their message is conveyed and take care to separate fact from fiction, to avoid scaring women more than they already are, when they come to this site.

On the radiotherapy experience, just to say that I have had no bad side effects other than tiredness which kicked in 2 weeks after last session. Skin was not sore even though nipple and areola peeled. The whole are went brown and where I had the boost (8 sessions) had a dark brown 6cm square, but that is now fading. Drinking plenty of fluids (3 lites a day) and slapping on loads of aqueaous cream helps. Cosmetically, you cannot tell I have had the treatment and my breast is same size and not tender, although I have been told it may shrink long term, by 6-8 weeks post rads I will have more of an idea of what size that would be. No regrets having the rads…wanted anything offered to avoid this hideous disease affecting me and my family again.

Bettina

breastcancer.org/risk/new_research/20100824b.jsp

It’s obviously your decision - but here’s my view on the points you have made (which is rather long I’m afraid).
(1) Yes radiotherapy causes a burning sensation, and tiredness - but the discomfort ends - whereas cancer can kill.
(2) When you refer to the statistical probability of a recurrence in your case, you need to remember that predictions of this sort are a general guide - not specifically about how your individual cancer will behave. As yet doctors are unable to say exactly how an individual patients cancer will behave - but one thing is for sure, if you get a recurrence it will be 100% your problem
(3) Don’t underestimate the value of radiotherapy. Many Doctors regard Radiotherapy as probably the most valuable weapon against cancer in the physicians armoury. Radiotherapy works by disrupting the DNA of cancer cells, so that when they can no longer divide and replicate, they die off. My understanding is that Radiotherapy, is actually one of the few treatments that can actually destroy cancer cells (when used at a curative dose). By contrast, various estimates suggest chemotherapy can only destroy between 30% - 70% of cancer cells. Whats more, unlike chemotherapy, the effects of radiotherapy treatment are permanent. Once cancer cells have been exposed to radiation the cells remain irradiated for the rest of a patients life.
(4) With regard to taking Tamoxifen, I understand your viewpoint. Yes there is lots of debate about the usefulness of Endocrine Therapy such as Tamoxifen and Letrozole, in the treatment of oestrogen receptive cancer, and you’re right that endocrine therapy does not destroy cancer - it delays progression by starving cancer of oestrogen. Some also believe that endocrine therapy effectively trains cancer to change it’s receptor, since the cells that survive are the one’s that have learned to exist without oestrogen (the inference being that this could eventually make the cancer more aggressive and difficult to treat). But the question you could perhaps ask yourself is, what is the alternative?. I take your point about a healthier lifestyle helping your defences, but if by bad luck you have a few micro-metastases floating round in your bloodstream (and sadly cancer can spread invisibly via the blood, even if there is no Lymph Nodes involvement), then the cancer would have already got past your defence system. If that were the case, endocrine therapy could help stop the cancer developing.
Hopefully, your lumpectomy will have removed the cancer, and it will never come back. But if by bad luck you have a few cells left in your scar tissue, radiotherapy could stop it developing. Similarly, if you have a few micro-metastases floating round in your blood, endocrine therapy could stop progression.
The reality is that there is not a single doctor in the entire world who can definitively say what the best treatment for cancer is - but if you do nothing, and wait for the perfect solution you could possibly make things worse.

hi

i agree with all you say lemongrove, even with all the side effects we get from both i still think anything that either slows or stops this bc from comong back is worth while. well written

annie

Well said sebflyte and lemongrove.

Why don’t you try taking something for your anxiety, as suggested, then think about finishing the course. it’s good that you are in a “better place” physically and emotionally than before, but you can be in that place and still have the rads.

Interested to hear your views on RT. I had 2 WLE to remove my Low Grade DCIS. At second op told I wouldn’t need RT. But on getting results was referred to Oncologist to discuss pros & Cons. All removed with margins of 10mm, I’ve been told this is excellent.
Had my meeting last Friday where RT was recommneded due to my age (51) had a good chance of it coming back & could be invasive, also found out area of DCIS was 2.3cm. After talking it thru’ with the expert I have now opted for RT & waiting to hear when planning appt will take place, my treatment to be over 3 weeks. I requested shortest possible time due to working full-time.
Feeling pretty positive but haven’t started this part of the treatment yet, so don’t know what side-effects will be. For those of you who have already been thru’ this is there anything you would recommend to make sure your skin in best possible condition prior to RT.
A friend suggested I look at it as they have demolished the condemned building (Surgery) now need to improve the foundations (RT) for the future. Take strength form the support here.

Lemongrove: excellent explanation of radiotherapy. Thanks for that!

HI

Aged 55 I was diagnosed with a triple negative tumour grade 2 less than one centimetre No node or vascular etc., TNBC tends to be very aggressive and regardless of size chemo is nearly always recommended. However, the team treating me advised that chemo would be overtreating so I only had radio after a wle. There are no additional therapies for tnbc. Almost three years on and I feel in a very sh…ty place thinking any day now I will get a secondary diagnosis. Nonetheless, I do have a little comfort knowing that I had radio after surgery. I personally did not have any side effects after radio, I think I fear the dentist more.

PS Excellent response lemongrove.