Hi Angelrainbow
Just wondering if you still use the forum. I am in same position.
How did your decision work out?
Hi Jeanie
I know this is an old post, but
How are you doing now?
I had a similar dilemma.
Thanks
Having had 4 lymph nodes removed which were all clear when I had a lumpectomy last autumn, I was told not to have blood taken or any shots in the arm on the left side. (I refused radiotherapy as I was on the borderline of it being effective for me) Is that forever, or just until it's all healed? Just had my Covid booster and flu jabs, in the right arm!-sore!
Fortunately I haven't suffered lymphodema etc, and have just had my first 'surveillance mammography' (clear) since surgery last November, I have started on Femera-I had awful side effects from the generics and came off them for a month. So far seems to be ok on that.
Hi, Thank you for post
Did you also refuse radiotherapy?
Had a 2cm DCIS- primary intermediate, so non-spreading
Not sure if hormone sensitive or not
Now facing a third lumpectomy op in as many months as they are not sure if it is all out or not but cannot tell exactly
Am not now sure, after this third op, about agreeing to any more treatments, radio or letrazole
as I don't feel on solid ground, if it had been one op- would probably go ahead with adjunctive- but now...
Cannot afford any private medicine- Im pushing 66 and although there are ancient men in my family, the women were all very short-lived through cancer-although not breast
Really concerned about painful, possibly debilitating unnecessary medical side effects, to no purpose
I know there are no guarantees here- but really not sure
Thanks
If the cancer came back after radiation and hormone therapy, my take away is don't bother putting myself through the side effects. If it's going to come back, it's going to come back
I appreciate that this is a really old Thread, but the feelings expressed are still the same in 2022 as they were in 2016 ie should I have Radiotherapy or not?
I have experienced RT on two occasions, the first being 18 years ago for a Right Breast DCIS it was not invasive and had not affected lympnodes, however the recommendations following a Lumpectomy was that I have 25 sessions of RT. I experienced no problems whatsoever during the 25 sessions or indeed in the 18 years since, and it gave me peace of mind.
Fast forward to the present, wrongly reassured during Covid by my GP that I did NOT have BC, two Cancerous Breast Tumours were subsequently confirmed a year later, one 9 and one 3 they were Oestrogen and Prog positive, Her Negative. These resulted in a wide incision/breast reduction (lumpectomy) with Lymph Clearance my bonus prize being 10 years of Hormone Therapy. I completed today my 6th of 15 sessions of RT, so far no Fatigue and no Skin problems fingers crossed this continues! So ..... As others said way back in 2016 and it still applies, some people do have side effects with RT or Hormone Therapy, but a lot of others do NOT have any side effects, so do not be swayed by others, so your own research, go on the web and look at the American Patients University which do easy to understand Medical Lectures for Patients to arm themselves with knowledge. Good luck!I
Silver6
I was diagnosed with a 'few grains of calcium' after an elective mammo in September last year when I was 76. Turned out to be a 2 foci 2mm and 12mm cancer in the duct, contained, but ER and PR+ HR-. So I had a lumpectomy, with clear margins, which has left me with a poor little squishy boob, and then they wanted to do a SNLB 'to make sure'. They took 4 nodes, all clear. I was told the recommended treatment was 5 years Letrozole and rx-'to mop up any stray cells'. I am taking the Letrozole, after being happily 35+ years on HRT. I was unsure about the RX so asked for a second opinion from outside the Bucks/Oxon circuit, and spoke to someone last week from the royal Marsden. She said, the odds of a recurrence with the Letrozole AND rx would give me a 1% a year advantage for 10 years over not having rx. So I figured it wasn't for me. I will be having annual mammos anyway. So that is what I decided. If I was 20-30 years younger it would be a different matter. Good luck to everyone who is going along this unwanted journey!
Hello Anne.
I decided to forgo any radiotherapy treatment and because of my reactions to drug therapy I also decided against taking any medication.
My decision about the radiotherapy came about after reading the Prime 2 study and talking to an oncologist. He fully supported my decision because I fell within the remit of an older patient with a 'low grade' cancer.
My decision about the medication was quite simply because I just couldn't cope with all the side effects of the different drugs. My lovely breast care nurse put my stats into her magic worker outer and came up with low risk so she said she was happy for me to do that.
Fast forward to now, over five years later, and I have been discharged from hospital care and apart from old age aches and pains etc feel really well.
I also changed my diet at the same time which I think is really really important - I also need to do more exercise though!
Just looking through what you said Anne. I'm a bit confused when you say you had a 5cm tumour and stage zero cancer. Did you mean 5mm? If it was 5cm I'm not too sure you would meet the criteria for Prime 2 Study. Have a read of the study and see what you think, the links are in an earlier post.
I hope this helps you make the right decision for you Anne. Ask your Breast surgeon about the Prime 2 study, and see what they think. We're all so different and what suits one person would not work for another. Do whatever you feel happy and at peace about.
Hope this has helped you. xx
[moderator edit note: doctor's name removed]
Gramma Anne here. I forgot to say I'm 73 ... don't know if that matters. Wish I was 40. That also doesn't matter .. lol.
This is all so new to me. I just had a lumpectomy. Removed a 5cm tumor. I was told I have DCIS stage zero cancer. I need 20 radiation sessions with 5 years of hormone therapy.
I'm questioning the radiation and hormone therapy with DCIS stage zero. Has anyone else had these thoughts?
Thanks,
Anne
What did you decide to do? I could have written that post.
anne
Oh dear, I am sorry to hear that. I found myself incredibly bitter after radiation, as I watched the breast worsen, but I didn't get infected. A good thing, as I'd had the mother of all infections beforehand. What made me angry, too, was the ringing of the bell when the last rad was done, when I knew it wasn't over. It's almost a year now, since I finished rads so maybe I should go back and ring it now. It does get better, Sarah. At the moment you have a lot to deal with, but maybe it's the last of it. I hope you get better soon.
Cathy
Yellow, I don't feel like running - hiding in bed under the covers seems a much better option! I think I'm probably going to have to bite the bullet as I can't see me managing the hormone replacement therapy and there's obviously only a certain amount of treatment you can refuse without encountering problems.
I'm planning on going back to the surgeon on Monday and asking to be referred to one of the other centres because, at present, the current Radiologist and team (see my thread) seem to be more of a problem than part of the solution. Hopefully I might have more confidence in a different team.
Good luck with your choice.
Hi Cathy,
at this moment all I wish to do is run and run!!
i have never run from anything but this takes the biscuit!
reading your reply has helped thank u.
will inform all of u my decision next week,
thank t u all.
yellow.
Yellow,
Nobody can actually tell you what's right, including the cancer team. All they can do is offer what they think is the best for you, and statistics are what help them to do this. So your 6mm falls into that place where they advise radiation for your type of cancer. Statistically, however, there will be people who had less than 5mm and the cancer returned, there will be people who had radiation and the cancer returned.
I was one of those who struggled with the radiation, and do feel side effects. It could be that my attitude is what makes me feel them - I don't believe nobody has side effects, just that they have a different attitude. I did have the radiation in the end and I am glad I did, as the fear of it returning gets worse as time goes by. For me, that is. This doesn't mean I'm not pissed off about it, just that I've accepted that it was a necessary evil.
I think whatever your decision you need to go into it understanding that side effects might be the lesser of two evils.
Cathy
Many thanks to u all for replying to my queries,
it is encouraging to hear positive answers.
i didn’t wish to take standard procedure,one size doesn’t fit all.
i will take a lot of time mulling thinks over the weekend.
Thanks again.
yellow xx
I can see where you are coming from Kathy. But I've just had a thought about the long term potential issues: We know that all treatments, including radiotherapy, have come a long way in recent years, and treatments are being refined more and more. It may be that the long terms health issues arising from rads that people have reported were to do with higher and less targeted doses in past years/decades, but that as things are more sophisticated now, those of us who are feeling fine may well go on being so due to better application of the rads. However, it's never easy making such important decisions so good luck with it all, and whatever you decide will be what is right for you. x
I'm in the position of trying to decide this as well, a slightly more complicated situation as I live in France. (I've posted about my problems on another thread). I think the thing that worries many of us is the possibility of delayed side effects, either soon after treatment ends or well into the future.
I was fortunate in finding my first lot of chemo (EC) quite doable (although I had problems with the Taxol and actually missed the last dose) but it was good to know that I could've stopped if things had been too difficult - I haven't come across people who had unpleasant things happen to them in the weeks/months/years after chemo in the way you hear of with radiotherapy. That means that, when you read people's positive experiences (which I'm sure is true of the majority) I tend to think "so far" in many cases.
Apologies for sounding negative, just trying to put some of my worries across.
Yellow
I am echoing Jobey and Optimissy, I had 20 session, 15 regular and 5 boosters, I didnt have any problems other than the pain of going to and from the hospital every day for 5 weeks which was a real pain. My skin went a bit pink but settled down quickly, I drank plenty of fluid, moisturised 2/3 times a day and rested when I felt fatigued. Mine was very small and caught early, my oncologist said it was belts and braces and I was happy to go with his advise.
Helena xxx
Hi Yellow1
just echoing Jobey. I had 15 radiotherapy sessions and was afraid it wasn't working as I had no burning or itching or anything, and kept fatigue at bay by drinking gallons of water, having a walk daily and an afternoon nap. Have also been on the Anastrozole for 20 months now and so far so good. No sign of any long-term health issues from the rads either. It is natural that people use forums for advice when things are not going so well for them, but there are far more people who are not posting, or even on the forum, who just have their treatment with no problems and get on with their lives because they haven't had side effects, so it's a bit skewed really. Your choice, but it certainly isn't anything to be feared- just jolly boring flogging up to the hospital daily. x
Hi Yellow, I did have radiotheraphy, 15 sessions also and just wanted to say i had no issues at all, it rarely causes any major side effects and other than a bit of a pink boob by the end I had nothing that bothered me.
It is a world away from Chemo and although I completely respect your right to choose whatever you do just in case you were worried it was a harsh treatment on the wholeit really isn't Xx Jo
Hi everyone,
i have lobular carcinoma.lobular carcinoma insihi grade 2 her2 protein negative.horme sensitive,nodes negative.
tissue sent away for Oncotype come back 5 out of 100.
up to 5mm radiotherapy is not necessary mine is 6mm.
oncologist would like me to have 15 sessions,I am thinking is this really necessary for one more mm?
plus to take Anastrozole.
my thinking is it kills off healthy cells to,is it a case of burnt or scalded?
side effects don’t always show till after treatments, is quality of life more important .
Anybody out there refused radiotherapy?
would be very grateful for any advise.
go back next week to give my decisions.
many thanks,
yellow.
Hi everyone,
i have lobular carcinoma.lobular carcinoma insihi grade 2 her2 protein negative.horme sensitive,nodes negative.
tissue sent away for Oncotype come back 5 out of 100.
up to 5mm radiotherapy is not necessary mine is 6mm.
oncologist would like me to have 15 sessions,I am thinking is this really necessary for one more mm?
plus to take Anastrozole.
my thinking is it kills off healthy cells to,is it a case of burnt or scalded?
side effects don’t always show till after treatments, is quality of life more important .
Anybody out there refused radiotherapy?
would be very grateful for any advise.
go back next week to give my decisions.
many thanks,
yellow.
Hi Cathy,
sorry I didn’t make myself clear when I was replying to you.
my head is like a whirl at the moment all the waiting we have to do for appointments an results I find very frustrating.
thanks yellow.
Yellow1, I'm not sure who you are asking, but here's my answer anyway.
No, I didn't have a mastectomy. I had a lumpectomy and then a massive infection, so I started the rads late and only had 15.
I am as fit as the side effects from the Letrozole will allow. I went off it for 2 months, and I've been back on for about another two months. The second time around is not half as bad as the first, probably because I'm in a different headspace.
Because of the infection in the breast I am very tender on that breast, but that is apparently not normal.
Cathy
I found that very informative thank you.
did you also have a mastectomy how many sessions did you have .?
i will ask the oncologist lots of questions.
are you fit and well now?
Yellow1
My nodes are clear breast tissue clear.
some tissue send away for Oncotype testing waiting for results plus a date to see the oncologist.
i first was fast tracked in 2014 then again 2016 I had this lump quite big.didnt show up on mamagram or untra sound therefore I was told it was part of me. Nobody listens!!
Recalled this August they found 6cm on the other side of the lump it was there on the 2016 imagine of mamagram I am so angry.
Had mri. Scan showed up on that,lump was 24 mm!!
Not sure about having radiotherapy but will listen to the oncologist.
3weeks since mastectomy feeling sore but getting there,
Hi yellow1,
Sorry to hear about the cancer.
I'm not familiar with lobular cancer, as I had ductal. And I was vehemently against radiation, but went through with it in the end. It seems that radiation reduces the risk of recurrence by 50%, although I only found that out afterwards. Do you have node involvement? I thought they didn't do radiation after a mastectomy, so maybe there are circumstances around your cancer that make it necessary.
My own side effects from radiation - well, it's hard to tell what to blame for what, but nearly a year later the skin below my breast is still compromised, the ribs hurt sometimes, and I am short of breath quite often. However, I have extremely sensitive skin and refused to use creams during radiation because of that. I have had asthma since the 90's, and so that may contribute too.
It all happens so quickly and we have to make decisions so fast. Knowing what I know now, I probably would still have had the radiation, with the same amount of kicking and screaming I had before, but maybe with a little less psychological turmoil.
I hope that helps.
Cathy
Hi Yellow1
I hope you are recovering well after the mastectomy. Another hurdle passed.
I had 15 sessions of rads to the left side without the breath-holding technique that some hospitals do, (mine didn't do it) and obviously i was aware of the slight chance of damage to the heart, but I figured that I wanted to give myself the best chance of not having a recurrence. I was also informed that the rads beams go sort of across the chest area, not "through" it. I am also aware that with any treatment, meds, surgery or whatever, they have to tell you the risks, however rare, so people have as much information as possible to make a decision. What we have to do is do a sort of cost/benefit analysis, and for me the priority was knocking any remaining little cancer sods on the head. Also the rads techniques are improving all the time so that any damage to heart or lungs is minimal or non-existent.
I had no side effects - skin was fine and I moisturised in accordance with instructions and drank a lot of water. 20 months on and heart and lungs are as good as they ever were as far as I can tell.
Before making a decision maybe have a good talk with your oncologist or breast care nurse and ask about the true likelihood of damage after rads. The same applies if your cancer is oestrogen positive - you will probably be prescribed a daily hormone tablet. Not everyone gets side effects from this and again, it's another tool in the toolbox to avoid getting it again. Good luck with whatever comes next. x
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
Hi geranium
Thats very positive thankyou, fingers crossed so far so good.
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.
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.
Debbie, I'm curious as to why you were prescribed letrozole if you were premenopausal. Did they assume you were post?
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
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
Hello Ladies.
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.
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. ☺️
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
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
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