Persistent symptoms after lumpectomy

Hi @Loveactually .... I have had arthritic joint pain for the best part of 10 years already and had surgery on both shoulders (last 10 years) and both knees 30+ years ago (but the pain iscurrently particularly in both hands and hips) ... and this was before starting Letrozole (over 2 weeks ago) .... so far it hasn’t been made any worse and I would have expected it to by now!

I think ‘our’ pain threshold may be ‘higher’ than those who DON’T currently have aches and pains before starting it as we are used to it ..... so fingers crossed you and I don’t notice much of a difference in the level of pain, as we have them already!  (Does that make sense?)

Thanks Artferret. I will certainly discuss with the specialist at the Radiotherapy Centre on Monday. Apparently they go through everything I should know! One would think that my specialist would of mentioned something! hopefully I find out more info. Thanks again, very interesting..

@Loveactually don't know whether it's too late seeing as your rads start Monday but ask your med team about a trial called EXPERT and whether you would be a good candidate for it. They do have to do a couple of tests to check for suitability but they use the tissue already taken from your lumpectomy.  It is for early breast cancer people  and is trying to determine whether radiation is needed as aprt of y9ur treatment. It is a 10 year trial and you get randomized into either the hormone only group or hormone plus radiation. I got into the hormone only group so dodged radiation but you have to be comfortable about that. My BC was small as well but took two ops to get clear margins. As for what drug you will have you may not get any side effects, some do some don't, i fell into the do category unfortunately.

@Loveactually I have been on Letrozole 10 months and yes there was some joint pain at the start but found a daily one hour walk helped a lot enabling me to walk thru discomfort quickly. On days I have missed a walk I notice it.I also do a gentle stretch and balance class twice weekly with light weights which also helps a lot. I was told by my oncologist to take Krill Oil tablets for joint pain which I do daily but can really comment on their effectiveness.Letrozole has 2 major worrying aspects bone thinning and it elevates cholesterol..Getting baselines for both before starting might be wise.Btw walking should help with bone thinning and Krill with cholesterol.I think the most important thing all round is to stay active and not give up as I have found the body adjusts.

Thank you ladies I'm feeling much more confident after your comments. Yes I had 2 sentinel nodes removed, which were clear. I suppose another of my concerns was the possible side effects once  I start taking the drug my specialist recommends. My cancer is oestrogen dependent so will need to block. I was taking HRT for 20 years, have stopped cold turkey and my joints are particularly painful. Apparently the drug I will have to take will make it a lot worse. I've gone off track now, soz should I go to another thread??? 

Was supplied in change room ONLY Calendula/ Sorbolene.Had bought Dermaveen as colloidal oatmeal I knew was old fashioned treatment for damaged skin @arpie but all good either way.

YOU were spoiled, @Romla .... I had to buy ALL my lotions and potions - not one was supplied!    :(

I now have a whole tub of Cetaphil I never even used!!  But a buddy is starting radiation soon, so will give it to her. ;)

Forgot @Loveactually my favourite emollient was the Calendula cream supplied radiation sessions and I must not have been the only one as had constantly to be replenished. Calendula is a herb supposed to be very good for radiation burns.But I never knew about Moo Goo until well after treatment ended and many on here swear by it.

Yep @Lynne62  @Loveactually Mine was caught early too, good surgery and clearance, radiation with minimal burns .... so also consider myself very lucky.

i only had 3 nodes removed and am luckily not affected by that either other than it is still numb in that area ... and the Letrozole will only decrease my likelihood of recurrence by 1% .... so if I DO get bad side effects, can also drop it if I wish.  In the mean time I will soldier on!!

Keen to know how you go with stopping the tablets, Lynne!

i was given cortisone cream for something ..... but can’t remember what now!  LOL. Fog Brain!

Yep, lathering the cream on 2-3 times a day (but NOT before your treatment) will hopefully prevent any adverse side effects.  Your boob WILL get very warm and stay warm for some 4-6 weeks afterwards as well .... and there’s a chance of short sharp stabbing pains now and then but they didn’t persist with me. 

Hi @Loveactually . We went to Cairns shortly after radiotherapy and I learnt you must be careful with UV as it seems to activate the radiated breast.
 The creaming productyou use is important too.Moo Goo is very popular on here .I used Dermaveen which worked fine .I creamed 3times a day for 3 months and more if I felt I needed it. Sorbolene is not such a great emollient - my radiotherapy clinic got rid of it and supplied Cetaphil mainly I guess as people rarely used it. They suppplied. Creams in the change room for straight after treatment

.Radiation can cause some rib pain but always get it checked with your oncologist to be sure.

I am a very fair Skinned redhead had 16 rounds of chemo and skin damage was minimal for me.

You will experience engulfing fatigue for a while usually after treatment ends and need to be prepared to slow down and nap when you need it - it didn’t last for long for me .

Treatment is 5 days per week so there is a lot of travel and finding a park can be time consuming .Actual treatment itself is quick 15 minutes or less. Most time is taken up at the start when they are planning your treatment and mapping where the zaps will be and for how long. I had LHS breast cancer so was taught to hold my breath to lift the radiation site from my heart .It was not difficult to do.

Hope some of this helps. Happy to provide anymore information if I can and you need. xo

PS Cost. Radiation treatment is exactly the same whether public or private - you can blend private surgery / chemo with public radiation. The latter has noexcesss whereas my private radiation cost $2000 excess as private cover did not pick up the tab. If I had my time over I would go public for radiation- my radiation treatment was quite short but the excess can be much greater depending on how many rounds your have.