Radiotherapy decision - I need advice please

Hi All,

I’m fairly new here & wish I’d found you all earlier - you are so supportive.

I have seen some great advice given here and wondered if I could ask for your thoughts on my quandary. Not big issues but important to me.

I’m one of the lucky ones really - my abnormality was found at my first screening, after much fun and games with surgery I was told I had a 7cm patch of high grade DCIS & wide margins, but still it warranted a course of radiotherapy. The standard course is 25 days, but if I insisted it could be compressed into 15 days - as is now standard for the cancer ladies treatment. My prognosis is graded 7 on the Van Nys index [20% chance of recurrence in 12 years], any less than that and no radiotherapy would have been offered.

It’s not urgent and I have consented to the rads for the time being which will start mid July BUT am I possibly being over treated - what would you do if this was you?

  1. This course will bring me back to normal standards for BC appearance i.e. 1 in 9. Otherwise it is doubled. This is reassuring of course and is why I agreed to treatment in the end, but I am still a bit unsure if I am honest, is this normal?
  2. I really don’t wants rads - I can see there are lots of downsides and side effects and I feel damaged enough already. It seems like an aggressive treatment for a minor issue - or is it? Are the side effects mostly minor and possibly overstated as has been suggested to me? - very reassuringly.
  3. You can’t have rads twice - so any recurrence is breast removal which I don’t think I could agree to. Would you save rads for any recurrence or recommend that I zap it now and try to avoid the recurrence?
  4. 15 days or 25 days? I signed to 25 days as I have this gut feeling that a slower less aggressive course might just minimise the side effects. There is no evidence of course but I feel the cut down course is due to cost saving. I’m prepared to invest whatever time it needs if I need to, but am I being a bit silly? What do you think?
  5. I need to work through this - I don’t get paid when off sick and it’s a very small company that would miss my input, even if it’s only part time. I also enjoy my job. Is there likely to be an issue of tiredness on a 25 day course as much as a 15 day course and does it stop you working at the end? I know everyone if different but opinions would be handy.
  6. I have a plates and pins removal surgery scheduled for 2 days before rads start - that is not silly is it? it won’t delay healing form rads will it? The oncologist seems OK but am I doing too much?

Clearly I know many of you face much bigger issues than I but I ma wavering. Any thoughts and ideas you might have to make this decision more firm in my mind woudl be welcomed.

Hi greenfingers

I didn’t suffer with any side effects from Radiotherapy,just a bit of soreness towards the end and for a little while after.I did have chemotherapy though so might not have noticed side effects as I was tired from that. Personally I would go with the 25 course of radiotherapy throw everything at it is my opinion.

I found this on cancer research web site,hope it helps.

A quick guide to what’s on this page
Side effects during treatment
Radiotherapy sometimes causes side effects during the treatment. You may have reddening and soreness of the skin, discomfort and swelling of your breast, or tiredness. These effects start to get better when your treatment ends. But you may feel tired for some months afterwards.

After your treatment
The radiotherapy may have some lasting effects on your skin and any breast tissue left behind after surgery. The remaining breast tissue may feel firmer and may gradually shrink. In some women it becomes tender. You may get small red marks on your skin caused by tiny broken blood vessels. This is nothing to worry about.

If your breast becomes swollen, see your doctor or breast care nurse. The radiotherapy may have caused problems with the natural drainage of the tissues. This is called lymphoedema.

Long term side effects
By far the most common long term side effects are the changes in appearance described above. Improved radiotherapy techniques mean more serious side effects are much rarer now. If you are worried about side effects, talk to your radiotherapy specialist and breast care nurse or look in the ‘radiotherapy’ section of CancerHelp UK

Mel xx

Hi, I went through exactly the same dilemma myself and found the medics to be very reticent in offering information. Finally, after days of searching research articles, I found this from the NHS evidence library. It is guidelines on best practice for DCIS, including whether radiotherapy should be used. It is a long document, but worth reading in your case.

acr.org/SecondaryMainMenuCategories/quality_safety/guidelines/breast/dcis.aspx

I think the soreness tends to be worse with bigger-busted ladies. I’m not and just had pink skin and some itchiness. Used lots of aqueous cream. I had 15 plus 4 boosters but because of Christmas and New Year, it ended up being spread over 5 weeks.

Ann x

Hi
Have my last rads on monday after 15 and 5 boosts. I have to say it’s not been easy but was bearable. This last week has been difficult, very sore and my nipple is black! Thought it would be easier as I have fairly dark skin but that doesn’t seem to be a factor!
As far as work goes, I’ve worked every day without too much trouble. Have been a bit tired but think that’s more to do with the journey to hospital every day, long one for me. You’ll be well looked after too, have had a great laugh with my radiographers at the walsgrave, Coventry. Rads is so much easier than chemo.
Lots of love and thoughts
kate x

I had 15 rads as it is not a shorter course to cut costs, it is the result of a study which showed that there was no difference in benefit of 25 vs 15. Some hospitals just seem to be stuck on the 25 regime…

I worked throughout my rads, and many people do. I had appointments at the end of the day, so just had to leave work a little earlier to be able to get there in time (the hosp was 1.5 hours from my place of work).

I didn’t have any tiredness, and only got a sunburnt patch. The skin peeled from this 2-3 weeks after rads finished.

I would say go for it. It is not as harsh a treatment as chemo, and may prevent BC coming back again and worse. Got to be worth a try, hasn’t it?

I can only echo what Flora says. I too had the 15 rads course and had NO probs at all. I had no burning, excessive tiredness or any other side effects ( actually I found the radiographers to be more efficient, more helpful and certainly more pleasant than the chemotherapy nurse/technicians -but I guess I was just unlucky with some of the nurses…!)

The rads appointments were always on time - I never waited more than 10 mins max and I drove myself to the hospital most of the time - an hour’s drive each way. I’m older than you so the work issue wasn’t a prob - but I found that the radiographers were very flexible re changing apps to suit the patients and I’m sure you’d have no probs fitting these around your work hours.

I think Flora and I are fairly typical- inevitably one does tend to hear more from people who have had probs. I do urge you to take up the rads option you have been offered - why would you want to live with that risk? BC is a real nasty disease for coming back when you least expect it and rads is certainly minimally intrusive and life- disrupting compared with more surgery or chemotherapy

Some people respond very well to radiotherapy, I had 33 sessions to my breast and some boosters to my neck, with no problems at all. My skin didn’t break apart from a little bit on my neck where the seat belt had rubbed it and wasn’t sore.

I didn’t feel any tiredness at all, well no more than usual, I had decided to take the year off, but went back to help out at work every morning because I felt that I was ‘better’ by this stage. I found the department to be brilliant and they will fit treatments around your work commitments.

Go with the maximum treatment now…there then hopefully won’t be a next time!

Regards

Nicky

Nicky

Thanks Ladies,

I’ve looked up what was offered by you and now I think I will stop worrying about this and just go with the flow - you have all done so with quite encouraging results. I appreciate your input.

A light bulb came on in my head yesterday - funny how all this stops your brain working properly - I had a copy letter from my surgeon to my oncologist arrived then, long after my oncology appointment but there you are. You are so right about us not being fully informed. On the second read I found out something remarkable that no-one has actually told me, every letter has one of these doesn’t it?

It seems that my mammogram was not completely suspicious and frankly they could easily have not followed it up with any form of biopsy. WOW. So my high grade DCIS could easily have not been found and I could have been three years before the next mammogram. That does not bear thinking about at all does it?

I’m feeling very lucky today and have a big smile on my face. It’s better than winning the lottery and suddenly all that unnecessary fuss I thought was going on has a purpose.

Meant also to say re: this point:
"3. You can’t have rads twice - so any recurrence is breast removal which I don’t think I could agree to. "

If you don’t have rads now I would have thought you increase the risk of an mx being a necessary option should it reoccur. I know everyone is different, but I don’t find having only one boob an issue at all. Don’t write off possible treatment now - you may not have the luxury of choice if it does come back. xxx

Hi Greenfingers

I didn’t have radiotherapy after first occurence of bc. There were lots of reasons why not, but most importantly it didn’t offer any benefit to my prognosis of ten year survival.

I now have a recurrence in my lymph nodes, but not in the breast, if the ultrasound is to be believed. The radiotherapy would almost certainly not have prevented the regional recurrence - the surgeon thinks the cells were left behind and dormant in the lymph node for 5 years.

So this time, if I were not pregnant, I would be having the lump removed and radiotherapy to the breast. Had the lump been in the breast for a second time, it would have been mastectomy because my boobs are too small to cope with any more messing!

Good luck with your decision, I know it’s really hard when you don’t want to take what’s on offer. I didn’t take anything other than surgery but don’t regret it.

hi just finish my rad’s and my plus boob’s are sore but cream help’s
i would have begged for rad’s if not offered as my mum didn’t have rad’s and sadly passed away .so for me rad’s was good for me and i will take everything offered to kick this into touch xx

I think you should press your consultant(s) on some of the specific points re your case. I have found them very helpful but you might to ask. BCNs are also very useful contacts in my expereince. I have had lumpectomy and axilaary clearance surgery, am half way through chemo and now half way through 15 rads. Rads OK so far! (I had grade 1 invasive cancer. 3 nodes also cancerous.)

Personally I wanted to take everything offered!

Good luck.