Radiation/Letrozole or NOT?

Chiroptera-girl

Was diagnosed at the end of June and had lumpectomy + one lymph node excision in early July.  Lymph node and tumour margins clear.  Tumour Grade 1 and only 8mm.  ER/PR positive.  Am reluctant to have any treatment - just can't decide what to do!  Was on HRT patches and have now ceased, so oestrogen levels lowered.  Left breast and don't want radiotherapy because of possible heart damage (am I being totally paranoid here?).  Having bone density scan tomorrow and will then decide whether to take the Letrozole that's been prescribed.  Just wanted to get some feedback from anyone who is/has been in a similar situation.  Has anyone had side effects from Letrozole?  Thanks in advance. Denise

Zoffiel

Letrazole can make your joints a bit creaky. I was already arthritic so it probably hasn't helped.  4 months in, life is bearable even though I am actually embarrassed to be seen getting out of a car; for some reason driving causes my feet and ankles to turn into a  solid block of "ouch'. Much hobbling ensues until my circulation returns.

I had excellent bone density before this whole shitfight began and that is about the only thing I will be monitoring post active treatment. I've had my ovaries removed so if my bones start to disintegrate I will consider whether to continue with the A I or not.

As far as radiotherapy is concerned, at least have a meeting with a rad onc and talk about what is worrying you. Radiotherapy is not at all like it was 20 years ago. Modern equipment is extremely precise (we are talking millimetre perfect) and delivers targeted treatment so your chances of nasty side effects, like your major organs being fricasseed, is greatly reduced if not completely eliminated. Yes, some people have periferal damage, but you need to talk to an expert to find out what your chances of being one of them really is. Marg xx

melclarity

@Chiroptera-girl I agree with Marg, Radiation isn't what it was years ago, it is incredibly precise around vital organs and extremely doable!!! It only really impacted me at the end as it's cumulative, so the burn and fatigue but honestly I'd do it again in a heart beat to Chemo instead! 

It really comes down to you, my first diagnosis was DCIS in 2011 so couldn't get an earlier diagnosis than that, my Surgeon chose aggressive treatment after lumpectomy which was radiation and tamoxifen. I think at the time for me it was about doing everything recommended by Specialists I trusted for the best outcome for me. There are no guarantees in anything of course, I had a recurrence at the 4yr mark. I don't regret the radiation at all, in fact Im glad I did it. 

I'm now on Aromasin, side effects are a little less to Arimidex, but yeah still creaky and painful getting up and moving, but I think Ive just learned to live with it, as in it doesnt hold me back. Stretching exercises I do help alot from my Exercise Physiologist. 

Over the past 6 years I've come to learn it's all a gamble with treatments, to do it, or don't do it...so it comes down to what sits best for you, and you alone. x Melinda 

Chiroptera-girl

Thanks Zoffiel.  Have spoken to both rad onc and onc re both treatments.  I feel I'm one of the "lucky" ones with diagnosis.  Breast care nurse said "if you had to get bc, this is the "best" one", so keep wondering if treatment is absolutely needed because so small and Grade 1.  Then again, should I be blasting it to make sure.  It's probably the bones I'm most worried about.  Scan will tell the current state.

Fortunately, I'm very philosophical about the whole diagnosis but just finding it very difficult to make decision on possible treatment.  I know nobody can make this decision for me, but thought some feedback from those who've already had treatment might help!!

It's so amazing to have this forum to turn to.  I was also so incredibly impressed with Breastscreen NSW and the fantastic protocols they have in place for diagnosis, treatment planning, follow-up, etc., etc.  The whole thing ran like clockwork and I can't sing their praises enough...

steplightly

Hi Chiroptera-girl  Much the same diagnosis as mine, no nodes involved, only Er positive, lumpectomy in June and on 2nd last day of radiation  I had 3 weeks hypo fraction radiation I was the same as you  ultimately 3 appts with radiation onc Including sending a very long letter about my concerns. He said it was very well written.I decided I needed to weigh up risks and reduction percentage for recurrence (realising no Guarantees regardless)  My next thing is supposedly letrozole  however for me side effect risks outweigh benefit. I am yet to have this discussion with specialist  It is risky no matter what  My type of radiation slightly larger dose delivered daily but less than a six week regime overall  No boost  Results  No redness or burning or anything else  No fatigue yet but this may come as effects are cumulative  I am at peace and calm with my decisions and fully supported by hubby and family  All the best in exploring what this journey means for you in the immediate  

Romla

@Chiroptera-girl my diagnosis and treatment was very similar except tumour slightly bigger. My tumour was close to the breast bone.I had 16 rounds of radiotherapy and was worried about closeness to my heart and am very fair skinned. They train you on a technique to lift the breast away from the heart before they start - basically deep breaths and holding it 25-30 seconds . Also I creamed up using Dermaveen three times daily as instructed. I am fine on both fronts. The worst part was constant daily travel at varying times to and from radiotherapy and trying to find a park.

 I am er+ and was very worried about hormone therapy . Have been on Letrozole 5 weeks and as I am osteoporotic have 6 monthly Prolia injection to build bone. Thus far so good - I take 2 Caltrate bone health daily , do a stretch an balance class twice per week and started walking on the other days for an hour.There are many on this site who take Letrozole also - am told side effects settle after a few months - me I am stiff if I sit too long but goes away when I start moving. Put Letrozole / hormone therapy in the search bar on the home page and much advice will pop up from panadol osteo to Magnesium to curcumin - my medical onc recommended krill/ fish oil.

Twenty years I had early onset menopause and was treated with oestrogen patches - could not take progesterone . I am wondering if it contributed to my bc. However I have larger breasts and am overweight - er+ bc comes from fat in the breast being converted into oestrogen.

primek

Ask them to show you the stats of possible recurrence with or without recommended treatments.

The standard treatment is lumpectomy with radiotherapy

Or mastectomy and radiotherapy if nodes are positive to armpit area.

Lots of research has shown that lumpectomy is equivalent to treatment with mastectomy ....with radiotherapy, not without. 

I know for me following chemo the best treatment was to take an aramatose inhibitor...it was a huge statistical difference. I felt for me the risks of not taking it were too high. No guarantees of course but I didn't want to get 2 years down the track and have regrets on what I didn't do. 

Take care. Kath x

Cyclo

I've been on letrozole for around 4 months and haven't had any side effects. I do have stiffness but think that is age related . I exercise frequently to keep flexible. The onco advised me that letrozole affects bone density and mine is low so now I skip every Sunday to build bone density. I had a huge amount of trust in my medical tream and followed their advice as I felt they had high levels of specialist knowledge whereas I knew nothing about  bc. Good luck with your decision making.