What Side Effects to Expect - and When?

Just to bring the picture up to date, I’ve now had 12 out of 15 rads and my boob looks like I’ve been standing for too long behind an open window on a sunny day! There’s a clear straight line around the edges of the treatment area, which is all pink and warm but not sore. Probably too much info!

Ladies
just thought I would add a note of caution to your thread. I finished rads in June and was very surprised by the recurring tiredness I felt during July and August. It has taken me a long time to get back to something approaching normal, although I will admit to having gone back to work straight afterwards which may not have helped.
I also used lots of aqueous cream during my treatment and was advised to drink lots of water to keep the skin hydrated. Although I got very pink my skin never actually split or peeled so I was glad that I had put lots of effort into looking after it. The only issue I had was that the rads irritated my surgical scars a bit and I found wearing a bra very uncomfortable. I also used a peice of cotton between my skin and the bra to make it more comfortable and even then I had to go for a sports bra in order to find one that was even remotely comfortable. I often tried to go without one at all just to let air get to it, not easy when you are a DD cup!
I still use E45 cream regularly as the skin seems to dry out sometimes, particularly if I have been active during the day.
Best wishes to all of you for the rest of your treatments
Maggie

Hi

I just had my first rad today. Bur a few weeks ago my gp presribed me a big tub of aqueous creamand told me to use it the week before rads to get my skin in tip top condition as had dried out a lot with the Chemo. I think I have an excellent gp! Will be buying cotton hankies tmrw and back to drinking lots like with Chemo. Has anybody elses hospital got physio sessions to show you the exercises needed to keep your shoulder movement ok? Have got mine soon and wondered if they are the same as the surgery exercises??

Vickie

Hi Vickie
I took up the offer of a physiotherapy class at the hospital immediately after my rads planning session, and the exercises they showed us were different from the ones recommended for post-surgery. For people who are not in the habit of doing any exercise at all then it would be useful, but I found that because I do Pilates regularly I’m used to pushing myself much harder than the physiotherapy exercises we were shown in the class. Either way, as long as you keep stretching everything and slapping loads of aqueous cream all over it, it’s got to be good for you!
Sarah x

Hi, 2 days off starting rads and am dreading it but the recent posts have have helped to calm me, thank you.
I have been using arnica cream for 2 weeks as I have a small haematoma under my nipple, and the arnica has helped to reduce it a lot. I hope it doesn’t go hard with the rads, as the Consultant said it might but it was a lot bigger when I saw him in clinic 2 weeks after the re-excision op. I have got big pot of Aqueous cream on standby for rads. I am not very good at drinking water though so, as I have had laryngitis recently, I am drinking lots of honey and lemon so hope that counts.
Sorry to sound a bit stupid but what is a breast gown?
I had a letter from Consultant last week saying that more DCIS was found in the second histology and I may need another re-existion but will try the rads first. However, at a previous appointment with an assistant I was told that they could only do Wide Local Excision and re-excision once, anyone else had this experience? After 2 ops and 15 rads in 4 months I would not be happy to have a further re-excision. Not sure what happens after rads will have to ask when I get there. Lorraine xxx

Hi Lorraine
There’s a whole thread on here on the subject of breast gowns - look a bit further down the page under “undergoing treatment: radiotherapy” and you’ll find out all about them!
Sarah x

Hi, Looking for info from you all again. I had my last of 15 rads on Monday and so far (but I know it’s early days yet) the skin is fine, but the tissue inside my breast seems to be tightening up quite rapidly. I’m exercising to loosen it off at least 4 or 5 times a day, but it’s still tightening. Is this normal? Is it likely to get worse before it gets better?
Sarah x

Hi Sarah I also felt the area ie. tissues inside breast and axilla tightening when I had rads. Started within first few days and felt just like post op period. Radiographers told me it was due to surgery not rads. Had been doing exercises religiously so upped them and am still doing them. Tightness gradually went and am OK again now.It eased up after rads finished. Hope you are more comfortable soon. Jackie

Hi Jackie
Thanks for the quick response. I seemed to have settled down after the surgery, partly because I had a 7 week gap before rads, but it is the site of the tumour that’s tightest, so perhaps the rads have aggravated it. I’ll keep up with the exercises - thank goodness I’m not at work, I wouldn’t be able to do them there.
Sarah

Hi, I am new here - this is my first post.
I have had a lumpectomy (25th August) with clear margins and no nodes involved - thank goodness.I have my appointment on Monday to meet the oncologist to discuss radiotherapy. what will happen at this first appointment? It is at the main hospital and not where I will go for the treatment. I have a cough and cold at the moment and am worried I should cancel Monday, but really don’t want to wait anymore! I am also worried because the nipple on the ‘bad’ side seems different and I am scared it is more than my imagination. The emotional side is so hard, I know I’ve been lucky but feel very low today.

Hi Miscally
It’s a shame you have to join us here on BCC but you’ll find everyone is very helpful and supportive.
Having had the surgery, your next step is to get the pathology results from what they removed during the surgery, and presumably it’s those results that you will get when you see the oncologist on Monday. These results will be more accurate than any biopsy you had before the surgery. I strongly suggest that you go to that appointment with your partner or a friend, it’s so difficult to take in all that your being told when you’re already upset. And ask for a copy of the results in writing so you can look over them a few times if you need to later on.
The oncologist will tell you what treatment he/she is recommending and why, and this is likely to depend on a number of factors such as your age, what stage and grade the cancer is, whether it’s hormone receptive, and so on. It’s a lot to take in, so take your time and ask lots of questions.
Sarah x

Hi miscally and welcome to the BCC forums

I am sure you will continue to receive lots of valuable support and shared experiences from your fellow users.

In addition, please feel free to call our helpline for further support and information on 0808 800 6000, weekdays 9-5 and Sat 9-2.

We have published a resource pack for those newly diagnosed which you may find helpful, you can read more about it and order a copy via this link:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/

Take care
Lucy

Thank you Lucy.
I am feeling rotten with this cold at the moment and this is making it all so much harder. I will send off for the pack - it looks really helpful. Thank you again.
Miscally

Hi Cheshire,
Thank you. I have seen my surgeon and had the results - I have been very lucky and they got clear margins and no node involvement. I had a tiny (9mm) grade 1 Invasive Ductal Carcinoma, found at a routine mammogram. I think part of why I feel down is that I think I should feel ‘lucky’ and I don’t really. I don’t feel I can moan to anyone, I guess that is why I’m on here!
I am on Tamoxifen (feeling a bit nauseous)and will be having radiotherapy and now I have a bad cold! I am very sorry for myself today, sorry.
On Monday I go for the first visit to the oncologist - I think it is to discuss the rads and when they will begin. I was just wondering what will happen - I know there is the planning but I’m sure that will be later at Mount Vernon.
Sorry to ramble.

Hi Miscally I had my planning meeting at Mt V too.The staff there were really lovely.You just have to lie still and various complicated sounding measurements are talked about. Mine was done via a CT scan. I had 2-3 v.tiny tattoos put on, one each side of me and one lowish down in the cleavage area. They really are minute like a very faint biro dot. I can only find 2 now but think there were 3( this was only at the end of Aug)oh forgot I was drawn on too with thick black felt pen and a fier green one by the Onc, these all washed of later. All these measurementswere referred to by the radiographers at each rads to make sure I was in the right position. They made it all quite simple really.I had to sign a consent form for rads and was given a list of all my rads dates oh and some acqueous cream.Hun you are welcome to moan/rant etc on here, there is no competition to be won re the biggest/worst BC. We all have/had it.Its great news that you had clear margins congratulations.Hope the cold is better soon. Jackie

Hi Miscally
Misunderstood, hadn’t realised you already had your results. Know what you mean about feeling you can’t have a moan because you’ve been “lucky”, I was in a very similar situation to you. Just because other people are in a much worse state doesn’t make you feel “lucky” that you’ve got to have surgery, radiotherapy and hormone therapy for years after that, but you feel guilty for having a whinge about it when other people have to have mastectomies and chemo and all the rest. You carry on and have a moan, it often makes you feel better!
Like Jackie says, the planning session isn’t anything to worry about, but it can take a while - mine took nearly an hour. I’ve got two tiny tattoos, one in the middle of my cleavage but very low down, and one under my arm, but they’re both tiny and nearly invisible.
Sarah x

Hi,

Thank you so much for the reassurance and support. I am so pleased to find others who understand how odd it feels to be ‘lucky’ but still scared and worried and fed-up. I don’t want to moan to my husband or children as they are worried enough themselves and friends can only take so much! I have a very good friend who lost their daughter to leukaemia, so I really feel that I cannot ‘make a fuss’ around her, although she has been great. As you say we are all in a similar position re treatment (no chemo, thank goodness) regardless of the ‘extent of the problem!’
Thank you again and best wishes, I’ll let you know how it goes.
Miscally

Hi miscally, I am so sorry you have had to join the forums but you will receive lots of support and benefit from the posts, as I have.
Hope you are doing ok.

I too was diagnosed with DCIS mid June following mammogram before having cysts aspirated for the 3rd time on left breast. Complete shock as having 3 aspirations I assumed all would be well after the biopsy. So glad they gave me another mammogram (GP manager wanted to aspirate in surgery?!) otherwise the bright young lady doing the 3rd aspiration wouldn’t have noticed it and referred it to consultant/MDT. Yes, I too was told I was “lucky” to be picked up early but I didn’t feel at all “lucky” at 49 being diagnosed was honestly the worst day of my life so far. The BC nurse afterwards wasn’t too sympathetic and started telling me about surgery, mastectomy, prosthetic boobs, I really wasn’t ready for all this so soon.
The Consultant recommended wire guided WLE in June but unfortunately needed re-excision in August and histology results say still haven’t quite got it all so started rads Thursday. Rads are fine, had 2 out of 15 so it’s early days but please try not to worry, very quick and efficient and I am using aqueous cream from Superdrug. I hadn’t been told about this, found out from the forums! The journey and parking facilities are honestly the worst part but it has to be done.
I bought 2 plain cotton bras from Asda yesterday for £3 and they are brilliant, so comfortable, so will be getting a few more.
Although we all have family and friends on this forum, you feel like you are on your own and the people posting here have gone through this rollercoaster of an experience.
It has really helped me to read/post on these forums from time to time, so just keep dipping in when you feel like it.
Take care of yourself and hope it all goes well for you
Lorraine x

I am back from my (very quick appointment). it was just to let me know that I will be having 18 rads to the ‘whole breast area’ and should hear about the date for my planning meeting in the next couple of weeks. I hate all this waiting. One really nice thing was the doctor said, ‘the cancer you had, and I mean had as it is gone’! I knew they had taken out the whole tumour and that there was no spread, it was nice for him to put it in the past tense though!
Now just got to get the rads out of the way (should be easily over before Christmas) and get on with the rest of my life.
Thanks again for the support, it is great to be able to talk to people who know what it is like.

I forgot to say - I’ve ordered the ASDA bras online. Thanks for the tip. I will get the aqueous cream too, when I have my dates.