small steps forward

Karen_A

Hi everyone, just a little hello as I’m joining you on this journey and now feel brave enough to say hello. 

I was diagnosed June 28th, following a random self check, two weeks before a planned 5 week trip overseas; and since then I have commenced the journey of small steps through appointments and surgery, cancelling (postponing) the holiday, and  I’m now 4 weeks post op - lumpectomy and lymph node removal/biopsies,  I have a diagnosis of left IDC. no lymph node involvement, but dcis around the tumour found and also removed. It was a shallow tumour so whilst just enough clearance obtained near the skin, not as much as they’d like. So I’m about to start radiotherapy (in two weeks) with a little extra thrown in for good measure to ensure the skin is treated and be certain there’s no spread there. To say I’m anxious about this is an understatement!!! 

I also met the medical oncologist today too ( I’m 52 and well into perimenopause) and to commence tamoxifen post radiotherapy too.

What a whirlwind/rollercoaster! 

I’m so very grateful it’s been found early and is being treated, sad that’s it’s happened and angry that life changes so quickly. But currently my fears are the radiotherapy side effects, particularly with the ‘extra’, and then the ongoing meds. I know treatment is optional, but I want to reduce risk of recurrence so will definitely go ahead with it, no question in my mind. But words of wisdom re how to do it ‘well’ or just knowing I’m not alone in my thoughts would be welcomed. 

Progressing with one small step after another, next step is mapping. 

Wishing you all well x

Abbydog

Dear Karen_A,
My story has similarities. (If you click on my name or Icon, you can read my story in my Profile)
I found my lump too. Feb 2020, just as we should have had a holiday to Japan, and COVID started.
We cancelled that holiday, based on the BC. That was relatively strait forward. 
Covid was quite a nuisance.
You definitely need to take it one step at a time.
I too, was very thankful to have found it myself. I had had a Mammogram only 9mths before.
Mine was Stage 2 and Grade 3, so I was very lucky not to have left it to my next Mammogram.
Having BC is terrible news, but I have been so lucky in many ways. 
Radiotherapy wasn't at all difficult for me (5 weeks). I was quite well, and drove myself there.
The hospital I attended for R/T used and supplied Mepitel.
It is a plastic looking dressing, that stays on 24/7. It protects the skin from friction etc, and helps retain moisture.
I did not need to apply any creams while the Mepitel was on. I had no burning at all.
 As you said small steps forward. Wishing you all the best, ask anything.
 

jennyss

Hello @Karen_A,
I am happy to back up Abbydog's experience. Seven years ago now I undertook radiotherapy; which wasn't too difficult for me either, with only a little burning that was treated with creams and recovered within three weeks of finishing radiation. 

from jennyss in Western NSW

MrsMorrisey

Hi Karen. 

We have very similar stories. I’m 51, 50 when diagnosed, had grade 2 stage 2 with no lymph. 

Two ops, first removed the invasive, second for extensive DCIS. No chemo for me, was offered but declined. Did not do oncotype. 

15 rounds of rads with a boost on the tumour bed. 

It wasn’t really that bad just mentally taxing and just a bit crap. Boob held up ok but now I’m religious with my oils so  the skin is looking and feeling better than before. 

Bit of swelling and pain a couple months later which was surprising but see an onco physio for that. She massages and lasers the scar. 

Sorry to hear you had the same thing but on here you’re never alone xx

Abbydog

Dear Karen_A,
Hopefully you are now at the end of your active treatment.
Soon some things will be back to normal. Others won't.
You will have some worrying thoughts, most of us do.
Make plans for something to look forward to.
Maybe a smaller holiday, until you feel stronger.
This year we took a holiday to Europe, it was wonderful. All went well.

Karen_A

Thanks everyone, I really appreciate all of your comments. Mapping and planning now done, commence Rads next week for 4 weeks, with additional targeted area, and using the breath holding technique. They’ve suggested Strata XRT to be used from the start,& they’ve said they’ll check how I’m doing at week 3 to make sure I’m ok for fourth week due to the targeted amount. The hospital team have all been amazing. 

Trying to remain focused on all the positives and plan for future trips away. 

Another step forward. Thanks again xx

Abbydog

Im sorry Karen_A, I misread your posts. I thought you had finished treatment. All the best with R/T

arpie

All the best with your Rads, @Karen_A ... mine was on my right boob so I didn't have to do the breath holding bit ...   Great that they've suggest the use of Strata XRT to help prevent burns.   Keep the lotions/potions up to the Rad area at least 2-3 times a day after each session, specially before going to bed ....  and continue doing that for 4-6 weeks after the Rads finishes, as it 'continues' to 'cook' - and will feel warm for about that period of time.   My Rads team was just amazing - so much so, I blubbed like a baby on my last day!  I felt so emotional as I'd been with them for 5 of 7 days every week & were my 'support team' ...  Keep an eye out for any really pink areas or if the skin 'breaks down' ... let them know.  I found it almost 'relaxing' & almost fell asleep a couple of times!  (but I didn't have to hold my breath! LOL)

I went on holiday to Norfolk Island afterwards, as a 'well done me' ... and just loved it.  

take care & all the best 

Jump onto this thread to read a little more about the group & other areas you may be interested in 
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Julez1958

Hi @Karen_A
I had my radiotherapy in Sydney and the centre offered Mepitel to prevent chemo burns.
I could not have it as I had a mastectomy but not a complete one ( skin sparing) as I was going to have a reconstruction down the track and I had a weird shape is hard to explain.
Anyway I was given a voucher for a discount for strata xrt creme I had to get online from overseas - it was still expensive .
The nurse  showed me how to apply it - there is a temptation to put on too much and it becomes “ sticky” - tricks to apply like a thin film that sets. I had 28 sessions and only got a bit of pink in the last week but I never got burnt or broken skin.
I also met women at the centre using the Mepitel who had good results 
So if the centre offers Mepitel and you  a suitable candidate I would recommend it - otherwise my experience  with the strata  xrt creme was good.
All the best 🌺

Karen_A

thanks again everyone, the feeling of support and understanding from you all is wonderful and really helps. 

This week I’ve felt calm as no appointments, which is the first time in a while, so now for the next step. 

Coastiejas

Hi @Karen_A
I found the radiation not too bad (it was a breeze after chemo!).
The side effects I had were fatigue and a bit of skin burning (a bit like sunburn).
I had 25 fractions with a boost dose over 5 /6 weeks.
For the first few weeks I didn't feel anything at all. Then some fatigue. 
The worst effects on my skin were about 1 week after I finished.  It then went away and about weeks after I finished it was all gone... nothing to see here! I used moogoo and qv and  qv intensive cream. It was all very manageable including the dibh breath holding. 
I have started hormone therapy and it is manageable as well.... lots of hot flushes 😳 
Best wishes for your treatment. 

GorgyS

I went really well through radiation, better than through chemo. I had mepitel and no issues with skin. I too feel so tired. Not sure if it is a side effect from radiation that I completed 6 weeks or from letrozole.