Hi,
Hope someone can help me. My mum had a partial mastectomy a few months ago.She is 79 and lives 80 miles away with her husband (who won’t let us attend any consultants’ meetings) so we are left in the dark about details. She tells me she has ‘inoperable cancer nodes behind her ribs and sternum’ She is to start chemo having had radiotherapy post surgery.They didn’t body scan her pre surgery and then found cancer in lymphs in her neck during the post surgery scan. Hoping someone can give more info as we are all so worried and her husband just tells us it is ‘the next phase’.
Many thanks.
Hi Elmhurst
Sound like your mum has secondary (metastatic) breast cancer where cancerous cells from the breast have travelled around the body. You can check out more on the site here: breastcancercare.org.uk/secondaries and also here: macmillan.org.uk/Cancerinformation/Cancertypes/Breastsecondary/Secondarybreastcancer.aspx
Her husband is right when he says it’s the ‘next phase’ although not everyone will progress.
Secondary BC is usually treated with chemotherapy which can be given intravenously or orally and for women who are post-menopausal and hormone positive with drugs called Aromatase Inhibitors (again, you can find information about these as mentioned above) Surgery is not usually done for SBC and also because of your mum’s age, I imagine she may also have other health considerations which the oncologist will take into account when deciding treatment.
Chemo can be tough to do so perhaps the onc is looking at tablet rather than IV chemo. They will monitor response to chemo, probably by doing something like a CT scan to check if there is regression or progression. Just because it is the ‘next phase’ this doesn’t necessarily mean that your mum is at the end of her life.
What can you do for your mum?
If she doesn’t want to talk about or focus on her cancer, just be there for her so she can talk about all the normal stuff. Maybe make a trip to take her out or just spend some time with her.
Laurie x
hi Elmshurst
I have had inoperable lymph nodes in my armpit since secondary diognosis at the beginning of 2009.I had chemotherapy,radiotherapy and have since been on hormone therapy.Each one in it’s turn has caused the lymph nodes to shrink and remain stable.
Why not give the helpline a ring on Monday,tell them what you know of mum’s treatment to date and I am sure they can help you with any questions you have.
The main thing is to be there for your Mum and give her as much support as you can.
This maybe your mothers’s way of dealing with things or she does not want to worry you.We all find different ways of coping.It can sometimes be overwealming to have too many poeple with you at appointments.Personally i prefer to go alone for treatments,my oh always drops me off and picks me up.
Because my son lived far away from me when I was having treatment, I always showed him anything I had in writing so he could understand what was going on.I have recently moved closer to him and he has attended recent appointments with me.
I am sure just seeing you and spending time wth you will make her feel loved and cared about.
L xx
Hello Elmhurst,
Sorry you’ve got this worry about your mum. I also have cancer in the lymph nodes behind the sternum and through the chain of nodes right up to my neck. Some doctors would class that as secondary cancer, but others (including mine) still consider it as a regional recurrence as the organs are not affected. It is, though, inoperable because of the position that it’s in; not because it’s too late or too far gone for treatment.
You mention your mum had post-op scans - what exactly did she have scanned? My recurrence was diagnosed by CT scan and I then had a bone scan to check that my bones were clear, too.
I should say that this is my second recurrence. When it was first spotted, five years ago, It was just behind the sternum and was treated with rads, even though I’d had rads to the area at my initial diagnosis. However, it was 3 years after my first lot of treatment and I was 35 at the time, so perhaps the fact that your mum is that bit older and closer to her initial treatment means that rads wouldn’t be suitable for her.
That was followed with hormone therapy and the combination of both treatments got me to NED (no evidence of disease), for 5 years. Do you know if your mum’s cancer is hormone receptor positive? If so, that would provide another line of treatment which can be really effective.
Since my second recurrence, I have now started a tablet form chemo as I now need a more systemic treatment, given that the whole chain of nodes is affected, and because I’d done 2 types of IV chemo at initial diagnosis. There are also a number of other chemos to try as time goes along.
Could it be that your mum is trying to “protect” you by keeping you away from the meetings with her oncologist? Have you told her that not knowing exactly what’s going on is making you worry all the more and think the worst? If so and she just doesn’t want you to go along, you’re going have to respect that and just be there for her on her terms. I know that is hard for you as you feel you need the facts, but I have a similar situation but in reverse; my mum wants to be in all the meetings with me and my husband and I have to ask her to back off as I couldn’t cope with having to deal with her feelings as well as my own - I feel that I have to process the information for myself first so that I can then be a bit braver for her. I hope that makes sense to you.
If I can be of any help at all to you and your family, please feel free to PM me. Your mum is very lucky to have such a loving, caring family looking out for her. Big hugs to you all, Angelfalls xx
Thank you all so much for your replies. It has helped a lot. In answer to Angelfalls re my attending consultant meetings, - Mum’s husband is a control person and it is not that she doesn’t want us involved - it’s his diktat & she has to go along for a quiet life. He even told us we couldn’t visit or phone her post surgery - needless to say we ignored that. I am going to visit this week, once the weather breaks.I am worried as he is not caring for her properly and wondered how I go about getting home care for her once she starts chemo. She had radiotherapy following surgery and is not able to have hormone treatment due to other health issues. They didn’t scan her prior to surgery thus missed the cancer in her lymph node in her neck which has now, obviously, spread.(found after CT can) She has gone into such a depressed state and I’m worried about the pain killers she is taking as he is not monitoring them. I phone her every day and her speech is getting more and more slurred so can anyone tell me how I can force him to allow her to have someone come to monitor her on a regular basis? Kind Regards to you all and sending the utmost respect for your positive attitudes.
Bless your hearts x
Hi Elmhurst,
Could I suggest that you give the helpline here a ring and have a chat with them about your mum’s situation, they may be able to suggest how you can support your mum more.
Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2.
Take care,
Jo, Facilitator
hi Elmhust
It looks as though you are dealing with a difficult situation.Could you not get your mother to ask her gp to refer her to a macmillan nurse.The macmillan nurse will be able to monitor her treatment and pain control.It is so difficult when there is friction in the family and you are only trying to help your Mum.Maybe her husband would be willing to accept help and support from an outside professional rather than a family member.She could also get help from the pallative care team at her local hospice,and they also have real experience in pain control.
My husband (also my son’s stepfather) did feel a little put out when my son started taking me to appointments.My oh had been my support from day one,my son unable to help out too much as he lived 200 miles away.My son felt guilty because he had not been around to help through my chemo and radiotherapy.We now have a routine whereby my husband drives me to treatments(I always prefer to attend treatments on my own)and they both come with me to REALLY important meetings.
Maybe your Mum could explain to your husband that she really appreciates all his support and that she wants to support him as well by getting someone else to help on a professional basis.I am sure she would also benefit from their experience, and he will agree if he has her best interests at heart.
I really feel for you when you are just trying to be a loving daughter and hope you can sommehow resolve this.
Love L XX
I’m sorry to hear about the difficult family situation, which can only make things even more stressful for you all, especially your poor mum. Lucinda has given you really great advice and I hope that your mum’s husband will agree to professional help, for everybody’s sake.
On the point of the scan, it isn’t routine to scan patients at initial diagnosis in many areas of the country. I didn’t get any type of scan done until I presented with symptoms of recurrence 3 1/2 years after diagnosis, for example. So don’t feel that the cancer spread from the nodes in the neck because your mum wasn’t scanned before her op. It was probably there in the other nodes all along and may even have been behind the sternum first, as in my case. It’s good news that your mum was scanned after, so that her team can take action now with chemo, monitor the whole situation carefully and hopefully prevent any further spread.
Do you know what chemo your mum is going to have? There are so many different types and they have varying side effects, so if you know which drugs will be used, you’ll be able to get more specific information on what your mum may experience. Although we are all different and our bodies react in different ways.
Good luck to you and your mum. I hope that you can get this sorted quickly, Angelfalls xx