Choice of taking radiotherapy or refusing

[Polly-anna]

Thank you Jan!

Apparently, 28 what is typically done at the cancer center, the extra will be a targeted blast.  The problem is the doctor could not determine if there is lymphnode activity, so they assume that there is.

I agree, we need to throw everything at the cancer. It is so aggressive.

One natural supplement I am adding is Turkey Tail Mushroom supplements. There are studies that show use of this supplement with chemo and radiation supports the immune system and also helps the cancer cells to die through apopotosis.  Definitely talk to your doctor.  I did and the onco is fine with it; in my case there is no interaction.

My onco also wants me to take Zoladex, which stops the ovaries from producing estrogen. But I am 51 and I think I should just get Arimidex. I am perimenopausal, not pre or post.  It's difficult.  I am going to ask the onco to show me the stats, even though I know it's truly not the same for everyone.  I was on Tamoxifen for 12 years... 2 years after going off of it...  The cancer is back.  I do beleive in Tamoxifen! It was easy to take once my body got used to it.  Also,  I used the generic made by Mylan, it agreed with me, another brand gave me a rash! So, not all generics are equal. I recomend try another generic before stopping. It is an easy pill to take.  

I hope that everyone reading this will continue to heal and find peace with this process. Somehow we got this, we got to get it out and keep enjoying our lives. We will! We will. Just breathe, listen to your body, then doctors, and fact check. There are lots of supplements - heck I told you about Turkey Tail!  Watch "Fantastic Fungi" on Netflix.  That is where you can hear about Turkey Tail.  I heard about it 15 years ago, forgot, and now I am trying it.

Breathe in Peace, exhale Love:)

[Jaybro]

Hi Polly-anna

36 does sound a rather large number of sessions when the average is 15. It may be that you are having a lower dose per session because, I believe, it’s the cumulative dosage of radiation that matters. Obviously the radiotherapy nurse or, if you have access, the radiographer is the person to ask why, ideally during your set-up session when there is time to talk. Some people have 5 doses but that is at a higher level of radiation per session.

The lack of clear margins is a sound reason for radiotherapy. I’m using your post to address a few issues raised in other posts. I hope you’ll excuse me but I am baffled by the number of women questioning the value of radiotherapy, known to be the most effective of all the adjuvant treatments at zapping rogue cancer cells. It may feel like a ‘blunt edged tool’ but, faced with a small but venomous spider, who wouldn’t hesitate to drop a brick on it? Cancer is an insidious disease, unseen and underestimated. There’s no way of checking where rogue cells may have migrated - CT and MRI scans can only detect so much - so precision treatments are pretty useless until it comes to too-late-stage treatments such as brain metastases.

It feels to me like patients should be asking more questions of their breast care nurses and clinicians. It’s not easy when one may be feeling tense or anxious, even woolly-brained from the whole exhausting experience of treatment, but they are the ones with the answers for each specific case. Does HT only affect the breast? Of course not - our hormones are what keep much of our body functioning. Believe me, when they go, so do quite a few functions we take for granted such as bladder and vaginal health. More parts of the body to be nurtured rather than taken for granted.

Almost everyone who has contributed to this thread, either with questions, frustrations or answers, will be fortunate to move on to a cancer-free life thanks to these treatments and the inconveniences and frustrations they are currently going through. Writing as someone less fortunate and with the value of hindsight, my advice would always be to listen to your clinicians and take every precaution available because this is a disease that, like that venomous spider, can come back to bite you. It will not be because you’ve done anything wrong - I’ve yet to see an obese secondary bc patient - but because it’s not infallible.

To everybody, I hope you make informed treatment decisions that leave you with peace of mind so you can move on and put the whole thing behind you. If you have any reservations, just do it because, otherwise, you’ll have that nagging doubt haunting you - and that’s not enjoying a cancer-free life which should be the goal. 

Wishing you all a cancer-free life ahead,

Jan x

[SkyBlue101]

Same thing here-uncomfortable

But statistics say radio is the right thing to do

Hope you feel better soon

Much more research needed into precision treatments for breast cancer, it seems

[fighterm]

I was told that if I do mastectomy I won't need rads, but if I do lumpectomy even with clear margins I will need rads.

[fighterm]

I had lumpectomy in January. ThenI have finished 13 sessions with 3 more to go. I am stage 1c, ER+, Her2+. Totally 42.5 grays. 

Margins were clear, though one margin was only 1 mm. My radiation oncologist explained to me that the risk of recurrence after lumpectomy is substantial, rads cut it twice and letrozol cuts it some more, so all together it will be less than 10%. But I also started feeling pain and burning in the radiated area. Hopefully they subside in few months. My doc said first month after treatment is the worst.

[Dolly dreams]

I had clear margins and had whole breast radiation for 5 session, finished last week.  I questioned why I needed it and they said it was to get rid of any stray cells that might have escaped. To me it seems a bit of a blunt edged tool. Currently experiencing pain, swelling and tenderness big time and incredible fatigue 

[Polly-anna]

Hello Alpha!

Thanks for the info.  I am new to this forum and saw your response to having Radiation or not.

I hoping you can please tell me how many cycles you had.  I am told I need 36.  Seems like a lot, post surgery and I completed Chemo, Taxotere and Cytoxan. 

Thank you for sharing your experience. If anyone else can share the number of Rads they recieved for post surgery radiation for localalized ER/PR Positive.  I am having it because they couldn't get a good margin and there may be Micromets... 

Thank you!

[Kay0987]

From what I've read DCIS cannot be invasive. That's why it's ductal carcinoma in situ. It doesn't go outside the breast ducts. However, it can become invasive if not taken out which is why it almost always is removed by surgery. It can also be found after taken out to have some small spots or even bigger spots of invasive carcinoma within it. That's pretty common in fact unfortunately.

[Dolly dreams]

Just to point out that DCIS can be invasive. Mine was.

I am 11 weeks post surgery and start Radiotherapy tomorrow.

I started anastrazole 8 weeks ago and had terrible side effects. I am now on a 6 week break from it and will review with my oncologist wether I resume it or not. But for me the radiotherapy was essential in my mind. I was told that I was at a 10% risk of reoccurrence, radiotherapy halved it to 5% and anastazole a further 2.25%

[SkyBlue101]

Hi Mermaid

I went ahead with radio and finished two weeks ago

Whilst a little unnerving, it is not painful and can carry on as usual before and after the sessions

Some side effects have now emerged as was predicted, an itchy pink rash on the irradiated area and

feeling very tired at odd times of the day

Don't feel the rash is enough to contact the nurses yet, hoping it will dissipate on its own and with much E45 lotion-now a shocking price alas!

The operators are very professional  

Good luck if you go ahead

[Mermaid13]

Hi Skyblue

How did you get on with radiotherapy?
Im due to start Thursday, but thinking of cancelling!

Hope it went ok.

[fighterm]

DCIS can also transform to invasive cancer. I would use rads even for DCIS only. In my case, I have both. Probably had DCIS which transformed and an invasive tumor grew from the part of DCIS. 

[SkyBlue101]

Thank you for that information, had not realised DCIS stayed in the breast after an operation

So will begin the radio with much less worry

[fighterm]

DCIS is not invasive, it stays in the breast, so radiation should kill all DCIS cells. 

[SkyBlue101]

Thank you for reply, and to everyone here

the thoughtful posts are so helpful

Think better take the Radiotherapy despite side effect anxiety and the 8-month gap from first surgery

Supposing that even though secondary cancer could appear anywhere, the most likely return point is the original tumour bed

Also It may be the case as many here have said people mostly only post about bad side effects-not if things went ok

So now I go forwards in hope

 good luck all

[Mermaid13]

Hi Jaybro

Thanks for your reply.

I’m on Tami because I’ve had osteoporosis. I say ‘had’ because I’m waiting for a dexa, and I previously reversed and improved it massively without drugs. It’s probably still in my spine and my team obviously read my records.

I’ve also .....7 years ago......had another cancer. More advanced than this one, which I took 6 months chemo for. That was a no brainer.

I normally do the natural route, if it’s not cancer.

My team seem to be more keen on my taking the HT than the rads. Hence the choice not to take rads due to this study. 

I always research drugs. It’s the longevity of the HT that worries me.  I don’t want uterine cancer or possibility of blindness.  

I will do the rads.  The serious side effects seem to be very rare. I was also told 8% difference in recurrence with/without rads.  Also, any recurrence has a 30% chance of having spread.

I’m unclear why some are told either HT. ....or......rads.  A US publication also said women over 65 with the relevant pathology should be given a choice of rads or HT.  ?..

[Mermaid13]

Hi Alpha

Thanks for your reply.

The choice of taking/refusing radio is only for over 65s due to a study.

I wasn’t given choice of radio OR HT. was told initially radio possible, HT strongly recommended. Also told chemo unlikely.

So, no chemo, but when I saw Onc was told about study. He said 50% women take and 50% refuse.

I think they really want me to do HT. I understand the reason.

In US the choice is rads or HT for my age and similar pathology.

Decided to take radio as don’t think I’ll do 5 years Tami.

Interesting you’re much the same as me but told of such a low risk. I didn’t know that high progesterone was good.

One of the thins that concerns me re radio is that if a second tumour developed in same breast then it would mean a mastectomy if radio has been done.

[Jaybro]

I have to agree with Susan. Radiotherapy was a very straightforward process, except when one of the machines broke down, which caused chaos and long long waits. I have experienced some tenderness of the ribs and chest muscle since but it’s negligible compared to the benefits to me and easily resolved with some massage and movement.

I’m somewhat surprised to read that it has ‘horrible’ and ‘damaging’ side effects. Yes it does, for a few - and most of them still chose to persist. If this site is your source, remember that those who post are generally those experiencing negative effects. The majority of patients who’ve had radiotherapy don’t need to use forums because they’re ok. If there are still doubts, use the nurses’ helpline. It’s a fantastic service, the nurses are well informed and no one will try to push you one way of the other xx

[Susanmanchester]

There aren’t horrible side effects it’s totally painless slight redness of skin you can treat with cream . That’s it 

[Alpha]

Hi Mermaid, just thought I’d add to this thread with my own experience. I also had a tumour that was 100%  estrogen positive (8/8) & I believe equally high for progesterone receptors. Tumour was 11mm and grade one. I didn’t think twice about having the radiotherapy, actually didn’t think it was an option!! What’s interesting though is from the outset both the oncologist and the surgeon said that if I had any problems with the hormone therapy they were happy for me not to take as in my case the benefits were mininmal (0.7 to 1.5% benefit over 15 years).  I was also younger than you when diagnosed at the grand old age of 54! My understanding is that if a tumour is 8/8 estrogen positive then hormone therapy may be more effective at preventing recurrence than if a tumour was say 4/8 estrogen positive, however it being 8/8 estrogen positive doesn’t make it more likely to recur than one at 4/8 - hope this makes sense. In my case I preserved with the hormone treatment for 18 months but am now on an extended break - with the full blessing of the oncology team.

The predict model giving me a 0.7 to 1.5% benefit doesn’t yet take into account ones personal risk of recurrence/mets. Being overweight, inactive and progesterone negativity all seemingly affect prognosis so I’d like to think that because I’m neither of these my risk may go down further! I’m not saying I’m not going to go back onto the hormone therapy but because I had the radiotherapy I feel I now have the option not too! And finally I’d like to add that radiotherapy was a breeze!!

[Mermaid13]

I understand radio has to be started within 12 weeks though could be wrong.

i decided to go ahead, as don’t know if I’ll stick Tami.

My team strongly recommended Tami and gave me choice re rads.

But I am more scared of Tami.

Told s,e’s for partial are less.

[Mermaid13]

Thanks for reply.

I decided to take rads.

Starting in 5 weeks.

[SkyBlue101]

Hello, Yes

Was offered a choice of radio or tamoxifen in a similar situation, age 65

Reluctantly choosing radiotherapy, but have yet to go-

but the statistical difference between radiotherapy or none in stopping returning cancer in the breast seems so small and radio has such damaging side effects, really struggling with going forwards with it

I am quite some months after surgery in August

Also, if secondary breast cancer can in fact appear anywhere in the body at any time, is the radio in the affected breast after all clear in surgery a sort of in case/maybe? 

Seems odd there is no annual body scan to check 

Found it easier to be brave for surgery, which was at least finite 

Seems harder to face these choices

Hope you improve and do well with your treatments,

maybe radiotherapy is at least shorter than chemo,

although the side effects are often long, people have said

Good luck

[SkyBlue101]

Hi folks

Any thoughts or similar experiences appreciated

Am 65

Intermediate DCIS left breast diagnosed July

surgery in August, not clear margins, surgery again in Sept and again in October

finally clear margins

Radiotherapy now scheduled for 5 days in March

Given the amount of time since first operation in August, 8 months ago, seems that any stray cancer cells could be anywhere in my body by now

So wondering-given the horrible side effects-what is the point of having the whole breast radiotherapy 

Could have chosen tamoxifen instead, but it seems to be associated with toxic side effects also

But-Does tamoxifen treat the whole body or just breast area? 

Statistically, radio seems a bit unconvincing- 3%?

Especially weighed against the ruination of health, it can cause, and the time elapsed since the first operation

Any similar experiences- or doubts?.

[Chrissy H]

Well said Jaybro

You talk a lot of sense.  Personally I want to give myself the best chance of survival I possibly can.  I will take everything they offer me to make that dream come true.  Everyone is different and each to his own but I agree with all you have said. 💓

[Jaybro]

Hi mermaid

This is an interesting dilemma. It’s excellent that you have had a straightforward experience so far and your prognosis is good. One thing I have learnt during my 4 years in Cancerworld is that statistics in the end mean little. We are individuals, not statistics. You seem to be predicting your future based on others’ experiences - anticipating side effects from Tamoxifen (surprising to be given Tamoxifen post-menopause, usually we get anastrozole) because presumably you are expecting to have a bad experience and not last the course. It’s a possibility but you won’t know till you’re in there. And there are alternatives to tamoxifen if it does not suit you.

I was told by one oncologist that, of all the adjuvant treatments, radiotherapy was by far the most successful. Why would you not have it? 15 days of a painless treatment (unless you are one of the very unlucky ones), some tiredness and maybe some later soreness is a small price to pay for peace of mind. It’s all very well the statistics saying that the chance of local recurrence is negligible but you don’t know if you’ll be in the fortunate 90% or the unfortunate 10%, do you? And there’s no test to increase the certainty. I guess you’re taking a calculated risk if you let the statistics lull you into what may be a false sense of security.

Thinking from my current position, I look back and detect a degree of naïveté at the potential breast cancer has for wrecking lives. I’m glad because it brought me a period of peace of mind - I’d done the whole adjuvant therapies programme and was clear. I don’t think I’d have had that peace of mind had I skipped one of the therapies. Everyone has doubts about some aspect of treatment, some based on past experiences, some based on fear, some based on ignorance. Your doubts are certainly not ignorance, so what exactly are your doubts? Risk? negligible - they have it down to a fine art now. Pain? It’s not usual to experience pain. If you do, you can stop the treatment. Aversion to medical intervention? Understandable but this is cancer we’re talking about. Just wanting to be out of this awful circus? Again, understandable but you’ve had a relatively straightforward experience so what are a few more weeks?

Btw, your cancer was highly hormone-receptive. You are going to need those AIs, whether you like the idea of a hormone-free future (not necessarily easy) or not. The fact is, you have had a life-threatening illness. Surgery has removed the threat and you are at low risk of any metastasis or local recurrence. But cancer can be insidious and gambling with it without sound reasons seems to me a bit reckless because it can come back to bite you. Ultimately (obviously) the decision is yours to accept any of the adjuvant therapies but please don't base it on what you’ve read or been told about them because we’re all different. Go by what feels right for your peace of mind. Good luck x

[Mermaid13]

Sorry... should've said....if they are over 65 and fit the criteria....i.e. low risk estrogen positive.

[Mermaid13]

Thanks for your reply.

Apparently some women refuse radiotherapy when offered choice.

But my counsellor at Maggie's said some regret decision if they have problems with hormone therapy and want to stop.

I started Tamoxifen yesterday. Not AI as I've got osteoporosis. Felt a bit sick and headache but more concerned re later effects.

I'm 90% sure I'll take radiotherapy in case I had to discontinue Tami.

[Susanmanchester]

Why are you considering not taking the AIs ? 67 isn’t old . Of course you should have radiotherapy it’s painless - and also take the hormone therapy . Truly do not understand why anyone would not and I’m on Letrozole for 6 more years started 2019 . 65 and aiming for another 20 years throw everything at it 

[Mermaid13]

As I am 67, and a study saying over 65s have similar long term survival whether or not they took radiotherapy, I have been given the choice. Local recurrence 10% without, under 2%with radio.

I had a lumpectomy, 9mm, Grade 2, clear margins, clear nodes, estrogen 8/8, progesterone 8/8.  Told excellent prognosis. No chemo. HT strongly recommended.

I started the HT, but I don’t see myself doing the 5 years. I therefore feel I should accept the radiotherapy, as if I stop HT, I will have had no adjuvant treatment.

Any other over 65s offered a choice?