Just diagnosed with DCIS

Thanks Deb. Yes, BRCA 1/2 and PALB2. However I understand that there are some others they’ve just added to testing. 
There is a company that offers counselling and testing privately, it was signposted to me by Spire Hospital https://www.check4cancer.com/private-cancer-tests/genetic-testing .  I should add that I didn’t use this service, I was referred to NHS Service due to bilateral BC.

Keep going, you’ll be all done soon. Best wishes, Karen 

Hi Kim

its all a bit weird! Yesterday (the first day) was sort of ok, I felt very well looked after. Everything was explained well, they took time with me etc etc. it did look like something out of NASA going in with staff sitting at screens in front of a window looking on to the massive linear accelerator machine. They were so precise positioning me and I had two blasts from two opposite directions apparently to provide a back block to protect my lung. I’ve been reassured that there shouldn’t be any issues with my heart even though it’s on my left side. Each blast was about 1 minute and I heard a long bleep while it was going but no lights, nothing to see. The machine rotates around in between blasts and there was an X-ray done before the blasts from a different part of the machine that moved in and then out again. After the X-ray the table I was on, adjusts itself slightly.

I couldn’t decide whether to keep my eyes tightly shut or watch! Stupidly I thought I’d be protecting my eyes by closing them (utter nonsense) but had to keep peeking to see what bit of the machine was where. I did think of you just before the first blast as I was feeling quite scared and teary all of a sudden and I had an urge to jump off the table and run away (big old confident me). 
my doctor daughter said she always expects a laser to come out of the machine like a James Bond movie and I think I was worried about that, again silly me!

I was tired last night and this morning but that’s probably a bit of stress plus the travelling (an hour each way) plus I couldn’t put down my book like night so didn’t go to sleep until 12 and had to get up for the chickens at 6 am. My boob was sore last night, not skin sore but deep inside sore, that made me worried in case I was developing early problems that are only going to get worse but I took 2 paracetamol and was fine in the morning. They gave me a massive tube of Flamigel and told me to slather it on 3 times a day, I’ve also been moisturising that boob with Aveeno for the last week plus.

Today was quicker and I felt less well cared for, don’t know whether that’s different staff or just that they expect me to know the ropes now. I can’t see any breast changes and I feel ok. The radiologist yesterday said it was unpredictable whether I would have symptoms within a day or two or not for a week after. I have an official review with someone after tomorrow’s session to see how I’m doing.

I think that’s about all there is to say about it so far.

take care

Deb x

Chickenlover

i carry the bracca 2 gene, I was tested because it is in the immediate family ( I’m one of 6 and 5 of us all carry the gene) ! All five have had cancer over the years, breast and prostate.so now like my sisters I’m having double mastectomy and ovaries removed.

 I’m waiting appointment with plastic surgeon to have reconstruction explained to me then I have to make the decision, reconstruction or not. I’m finding that more daunting than the actual treatment for the breast cancer, but it has to be done.

Hi. After huge turmoil and an expensive but worth it second opinion I am going ahead on 25th with 5 days radiotherapy.  Please let me know how you are getting on. What cream are you using? Any noticeable effects? I'm scared but need peace of mind. The lady consultant privately was SO much nicer than my oncologist. 

Best wishes,  kim 

Hi Kim,

I was pleased to hear you’ve made a decision that you’re happy with.  I am sure others will let you know the creams they’ve used. I am planning on Flamigel RT.

Good luck with your treatment.

Best wishes, Karen 

Hi Kim

that sounds like you feel comfortable with your decision now, that’s good   I had my last/ 5th radiotherapy on Monday. I’m doing ok, there is a difference in the skin and a couple of days ago my chest was very itchy. I was told that this area is Vulnerable as it is thin skin that has had sun damage. There is some discolouration and it is dry over my whole boob. The nipple is sore and behaves differently to the non zapped one ie it doesn’t become erect when the other one does and vice versa, very odd!

I started using Aveeno a good week before over the whole boob (should have done my chest more). Then they gave me a huge tube of flamigel to slather on 3 times a day, which I have done religiously, let it dry for a while before putting clothes back on. I don’t let the shower run on that breast and if I get sweaty I mop it up so I’m not moist under the boob. I was told that it would probably be at its worse about now, if that’s true then it’s ok. I still use Aveeno after my shower, before the flamigel and once during the day too.

ihave also been tired and a bit weak for the last 4 days, it feels like it’s improving a bit.

Hope that helps, good luck

deb x

Thank you very much Karen. The turmoil I have had has been the worst. I thought lots of information would give me clarity but it didn't! I reached a state called "analysis paralysis"!!!!!

The surgeon said where he trained only high grade dcis would be treated with radiotherapy (mine wasnt) and that if it came back even after having radiotherapy it would be a mastectomy as the breast is too damaged to have a lumpectomy and is more difficult to have reconstruction.  My clinical oncologist was abrupt and simply following the standard protocol.  Didn't understand my fears... I realise some of it came from watching my husband suffer hugely for 6 weeks after his radiotherapy for testicular cancer. He then did 20 years later from radiation induced leukaemia..

The private oncologist treated me like the desperately worried lady I am.. I KNOW its only dcis and others have late stage invasive.. which makes my anger with myself making such a fuss worse . She said many reassuring things and told me the right thing to do would be to have it. I needed someone to affirm this. I'm hoping all is ok... but radiation damages you over the next six months, just hope my healthy fit body copes with it...

Hi. Thanks for the information. I know now for peace of mind and getting on with my life I have to have it. I still fear it. Mine was only 15mm and low/intermediate which in many parts of the country wouldn't even be treated with radiotherapy at all... I would have had the surgery on 10th March and been given the all clear. My boots are 34DD OR E Cup so I have been told its MORE radiation...... just the thought of doing damage (I fear my lungs) to a really fit healthy body, in which the dcis might never have progressed (50 to 80% never develop in a lifetime!)is so so hard for me.

I must not look back. This is what is happening now. ..

When do you think I would be able to work and resume running/lifting weights/garden all so much a part of my life? Feeling the way you do, would you be able to work? I have only scheduled 10 days off!  Are you wearing a normal bra? How big are you????

Glad to hear you are through it. Best wishes, kim

Morning Kimost,

I am pleased to hear you have reached a decision. You can now relax. Decision made, think no more about it. Your mind deserves a rest just as much as your body.

I used bio oil throughout. I had minor darkening of a small area of the breast and itchiness but no sores. The BCN advised massaging with E45 once everything had settled and the RT had stopped working several weeks after the last session.

Chickenlover I am pleased you have had your last RT session and appear to have got through it without too many side effects. The lethargy does last a while though so please give yourself a chance to rest. I didn't as I went straight back to work and I am paying for it now 5 months later.

Thanks mags. I'm intending working too and I'm a gym goer... what do you mean you are paying for it now? Are you still getting tired... needing naps? Or exhausted???