Hi all,
my mum has been diagnosed with secondary breast cancer in her colon. After finding the primary cancer and doing a biopsy they have put her on letrazole. They are optimistic that this will control and shrink the cancer. The reason I’m worried is that they are following up in 6 months. They haven’t yet checked whether she has secondaries elsewhere and said they will do a bone scan in 6 months time. My mum is struggling to eat and has lost lots of weight. She also is having problems with her jaw and can’t open her mouth easily. I’m worried that the follow up is too far away and that they should be checking her earlier than in 6 months. Am I right to be worried do you think? My mum doesn’t want to make a fuss and isn’t keen on me contacting her breast care nurse. Would be interested to know what others think. Thanks Mals x
Hi Mals
Welcome to the BCC discussion forums where the users of this site have a wealth of knowledge and experience between them and I am sure they will be along soon to offer you some good, honest support.
To help you along I have put for you below links to some of BCC’s publications you and your mum might find helpful to read. Also, our helpline team are only a free phone call away 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc58
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc173
I hope this helps. Take care,
Jo, Facilitator
Hello Mals,
Sorry you and your mum are going through this. I presume from your post that the secondary cancer was found first and then they established that it was breast cancer. In which case, this must have been an awful shock for you.
As I’m sure you know, Letrozole is an anti-oestrogen therapy which can be really powerful for those of us with ER+ cancers and with relatively few side effects compared to chemotherapy. But they are slower acting, which may be why your mum’s team has decided to wait 6 months before scanning her again.
However, as far as I’m aware, even with hormone therapies, the standard protocol is to scan after 3 months, particularly when we are just starting a treatment, so that they can check to see whether the drugs are working. If not, they can change to another drug.
I’m also surprised to hear that they haven’t scanned your mum to find out for sure the extent of the spread. This may not necessarily change the treatment she’s on, but usually they like to know exactly what they’re dealing with so that they can monitor closely for changes.
Of course, this is just my experience and maybe others will come along and say that they’ve had the same waiting periods as your mum. But if you’re not happy and she agrees, I would definitely ask her BC nurse what the reasons are. Alternatively, you could call the BCC Helpline - there are trained BC nurses who can give you more information about your concerns.
I hope you’ll get more answers soon and, more importantly, that the Letrozole will work wonders for your mum. She’s lucky to have a caring daughter like you. Good luck.
Thanks Jo for the resources which I have already taken a look at. Very helpful.
Angelfalls- you are correct. My mum had been losing drastic amounts of weight and although they suspected cancer they didn’t suspect breast cancer despite a strong family history. So yes- my sister ( who was diagnosed with primary BC 3 years ago), my mum and I are all in shock and feeling angry that it wasn’t detected earlier. I think that’s why I’m personally finding it difficult to trust any health professionals at the moment. They discovered my mums breast cancer after an outpatient procedure to investigate weight loss cause went wrong and she had to have emergency surgery on her colon. She was critically ill for a week and ten days later, when we thought she was through the worst and recovering, they broke the news that they had found lobular breast cancer cells in a sample of colon they had removed during surgery. My mums weight remains the same with a poor appetite and its difficult for us to know whether its due to her recovering from a major emergency operation on her colon or its due to her secondary cancer. I want to feel reassured that they are doing all they can for my mum now that they have finally found the cause but I didn’t feel reassured when she was told to come back in 6 months. However, I think my mum sees it as a positive sign that it is slow growing and the treatment is as you describe: very effective and needs time to work. I don’t want to dampen that positivity as I know it will really help her to recover from her op and face the road ahead. I just want to make sure she is getting what she needs.
from your post I’m guessing that you are living with secondary er positive breast cancer. Thanks so much for your swift response and your interest in my mum. It means a lot to me. I will check out the protocol. I’ve read your post to my sister and we have both discussed giving mums BC nurse a call. Thanks again. Mals
You’re welcome, Mals. I’m only sorry that you haven’t had more replies here, but hopefully you’ve spoken to one of the BC nurses by now and have some more information. My understanding is that lobular cancer can be quite sneaky, so you may be wise to push for follow-up sooner than six months if your mum agrees, but that’s just my opinion, of course. All the best to you all.
Just wanted to update you. Today my sister called to say she is getting increasingly worried about mum who is getting more and more fatigued. I grasped the bull by the horns and called the helpline and how helpful Jean was. Thank you bcc. I then emailed mums BC nurse and asked if she could access community Macmillan support to visit her at home and hey presto- they are referring mum for a home assessment. I’m as relieved as one can be in this situation. Just relieved that its not just me and my sister holding the anxiety (and of course mum even though she doesn’t say she’s anxious- she is- trust me I’ve known her for 42 years!) thank you Jo, jean and angel falls. I will keep u updated x
I hope you can all get the support you need soon and that it will go some way to making your mum feel better. Take care xx
Well the good news is the referral went through and my sister got a call today from the Macmillan nurse. She immediately asked if mum had had a full body scan which was reassuring as she hasn’t and that’s what we were worried about. The bad news is that mum is complaining of blurred vision and we are now both worried as to whether this is a side effect of letrazole or secondaries on the brain. Mum nursed her sister through lung cancer with secondaries on the brain so I’m sure it’s in the back of her mind as she now says she’s had this symptom for a while. Why does a few days feel like a lifetime of worry? I’m just hoping she gets this scan sorted soon so we know what we are dealing with. Not sure my mum wants to know what she’s dealing with though. Excuse the ramblings of a worried sick daughter. No real question in this post. Just sharing my worries.
mals
I’m so sorry to hear you’re having to deal with more worries, Mals. I just hope you’ll get some answers to your concerns very soon. Waiting for information is the worst time as your mind just runs riot with all the worst case scenarios. Once you have the facts, you, your mum and all the family can focus on treatment and things usually get a bit easier. I really hope that will be the case for you. Keep posting and remember you can call the Helpline again if you need to talk to someone. Sending hugs.
Just posting to say I am thinking about you Mals at this very stressful time. Here is a hug, Val
Only just picked up this post,think it got lost in the mass of posts,and am so pleased angelfalls was able to point you in the right direction. seems phoning the helpline was the right decision as you now seem to have support in place.I was dx with secondaries from day one(have yet to find the primary) in May 2009 and after biopsy it was decided it was breast cancer and I was er+ .I was prescribed arimadex, and this was changed at 3 months( as I then had a lump in the armpit) to letrozole which I have been on since and has kept everything under control.I am pleased they are now arranging scans so at least you will be more sure of what Mum is dealing with.Sending my love and hoping you have a peaceful Christmas together with your Mum xxxx
Thanks Lucinda and Scottish lass. It’s true what they say on here- the waiting is the worst part. To top it all my sister, who was dx with primary BC 3 years ago, went for a routine check on Wednesday and they found a lump. So waiting to hear about mums scan and sisters ultrasound. If it wasn’t for my 4 yr old son I would gladly abandon Christmas altogether - feel so helpless. Anyway mums scan is next Friday and my sister doesn’t have a date but should be within 2 weeks. Good to hear from others on hormone therapy. Mums is er positive too- hence the letrazole. Thanks for the messages of support. This forum helps get through the waiting.
mals x