My mums had a left mastectomy and her lymphnodes removed 4 weeks ago. She doesn’t know anyone else who has been through this and doesn’t have use of a computer. So ,she has asked if i can try to find out what sort of pains,feelings etc that should or maybe feeling around now. She is up and about but does not know how much she should be able to do. I think if i could give her an insight as to what other people are doing at this stage then it may settle her mind alittle. She is going to discuss her chemo treatment on Thursday and i also think shes abit anxious. Any comments would be greatfully received. Thanks.
Hi rooties,
Welcome to the BCC discussion forums, where I’m sure you’ll get lots of support for your mum from the many informed users of this site.
Could I suggest that you tell your mum about our telephone helpline service which is operated by fully trained staff where either yourself or your mum can talk in confidence about your mum’s treatment, I am sure the staff here will be able to put your mum’s mind at rest about some of her concerns,they’re here to support you through this. Calls to the helpline are free, 0808 800 6000 open M-F 9-5 and Sat 9-2.
Kind regards
Jo, Facilitator
Hi Rooties
I am sorry that this has happened to your mum and the family. It sounds hollow but it is all very confusing, especially at this stage. If Mum does not have a computer it would be a good idea for her to arrive early for her appts so she can get to talk to other women in the same position - the exchange of symptoms, advice and so on can be very reassuring and helpful.
I had mx with reconstruction a year ago so my sensation may be different because of that. In short lots of odd sensations turn out to be normal because after all she has had major surgery and nerves etc are disrupted. I think the main advice is to be moderately active, cry when you want to, don’t be hard on yourself and try not to worry about the next step, it can take some time to get through treatment.
The idea of the helpline and telephone support is a good one too.
Love to you both
Jane x
Hello Rooties. My wife had the same four weeks ago today.
I think everyone has a different experience, but the main elements of hers are as follows. She has felt all sorts of weird sensations since the op, but I think this is all quite normal. The inside of her upper arm is numb in a long triangle extending about 4 inches down from her axilla (arm pit), as is a similar region on her side, and most of the area where her breast was. If I touch under her arm, she sometimes flinches as if in pain, but says is is not actually pain - just feels weird. She is also feeling some itching on and around the wound, but of course when she scratches, can feel nothing.
She also feels a “tightness” down the inside of her upper arm to the inside of her elbow, which then goes diagonally across her forearm to end near her thumb. I can feel that as well. I suspect it is the lymph ducts and relates to “cording”, but hope it doesn’t become anything serious. Again, I think this is fairly normal at this stage (though I would like to hear from others on this one). I find that I can relieve this a lot by very gently massaging up her arm, which I think helps the lymph to clear. I read a bit about “Manual Lymph Drainage” and think this helps, but am trying to be really, really gentle (I can’t stress just how gentle) for fear of doing damage.
She also does feel some pains on her side below her axilla. Not extreme, but a bit sore, and she thinks there may be some bruises on her back just next to her axilla (it’s a bit tender there).
She is doing the exercises the physio showed her, which is really important.
As far as activity is concerned, it is quite hard to stop her doing things, and to be honest I don’t think I should - just doing what I can to help out and do the heavy or awkward stuff for her. She is trying not to tire out her left arm (the affected one), but I think some activity is important. She’s avoiding things like carrying shopping bags with the left arm, and is forbidden from pushing a shopping trolley. I am lucky that my work is quite flexible, so I can be around when needed, but I try to let her make her own decisions about what to do without too much interference from me. (They took away her breast, not her brain!)
I think the main thing is not to worry about all the strange feelings, but to ask the BCN if she has any concerns. Ours is really helpful.
Best wishes to you and your mum.
Hi Rooties,
Sorry you are in this position but it’s good that your mum has you to help her. My mum and I both have cancer. We’ve both had chemotherapy but neither of us has had any surgery yet. My mastectomy is due next month. Mum’s is in her lung and is inoperable. We will both be having radiotherapy to follow.
Everyone’s cancer journey is different but we’ve found it does help enormously to have someone to talk to who is going through similar emotions and side effects. I agree with Jane that it’s a good idea to arrive a bit early for appointments and meet the other patients for a chat. It’s also good to get someone to go with her to appointments. It can be difficult to remember what to ask and what the doctors say at the clinics when your head is in a spin.
I have found that people are desperate for you to be positive all the time, especially loved ones. It is impossible to be that way all the time and you can help your mum by letting her know it’s ok to cry and be upset sometimes. If she is normally very independent she will find it hard to ask for help and that is what I have struggled with the most. She will definitely need some support so you might have to take the initiative sometimes. Medical staff have remedies for most of the physical side effects so make sure she doesn’t suffer in silence.
I hope you find this useful. Jan xx
Hi Rooties,
Firstly I think it’s great that you’re helping your Mum, she will get through this.
I think the other posters have been very thorough in their advice. I would only add that for me the anticipation of chemo was far worse than the actual experience (I’m 2 years past diagnosis) It is very do-able and for every side effect there is a solution, I drew tremendous strength from the fact that everyone was in the same boat and getting through it, it made me feel that I wasn’t alone. Also the Breast cancer care nurses are great, no question is too daft!
I wish you and your Mum all the very best.
Hi there Jansman,
Yes the tightness you describe certainly sounds like cording. I had that as well and yes it didn’t start straight away but came on gradually. It’s perfectly normal and it will go but it might take a bit of time. Stretching gets rid of it but easy does it so keep going with the exercises. I think mine went after about 6-8 weeks post surgery. It’s caused (I think!) by the lymph fluid slowing down because it can’t drain in the armpit anymore so has to go and search somewhere else.
Hope that helps, take care
Veggie
Thanks everyone for the support and kind words. Youve all been very helpful. My mum has been given as she calls it ‘a pillow breast’. She seems to find it is rubbing where the bone of her bra should be. Does any one else have problems with these or maybe a solution to how she can get it to stop. Shes getting rather sore and red from it.
Hi Veggie. Thank you, that’s very reassuring.
Hi Rooties,
I take it the "pillow breast " is a temporary soft prothesis?
Does your Mum have a proper mastectomy bra with a little pocket in the cup that she can slip her “pillow breast” in? if not it’s worth getting one, just google mastectomy bra’s on the internet, there’s a few companies that do them.
Good luck, take care
Veggie
She has been told not to get a proper bra with a pocket yet as she has chemo,radio and hormone theropy and was told the area would become sore. But her soft one is rubbing under her scar and causing irratation.
Hi Rooties,
I would advise speaking to the breast care nurse, is she using any cream for the soreness? it seems a bit strange that she can’t get a proper mastectomy bra just now as I assume she is getting chemo first and then radiotherapy? is she due to have a fitting for a permanent prosthesis?
Your mum will not necessarily become sore during radiotherapy, it’s all about getting ahead of the game and applying cream before it gets sore, I had 4 weeks of radio and I wasn’t sore at all. the radiotherapists will probably give your Mum cream so you don’t have to buy it, it’s just aqueous cream nothing fancy. I was advised not to use E45.
If I can help with anything else just shout,
Big hug for you both, take care,
Veggie
Hello Rooties - I had a mastectomy op 6 weeks ago and did have a few probs after, fluid drainage 4 times and have cording. The chest/trunk area feels like a straight jacket and I am still sleeping on my back since op. Because I was ccncerned I saw my surgeon who explained that this was all quite normal after the op, so if your mum is experiencing any of this please reassure her that it will eventually improve - surgeon was amazed when I said that I thought after 6/8 wks of healing I would be back ballroom dancing, doing the gardening etc.etc. - and said this was just not the case, it takes time for tissue and nerves to mend. I am obviously an impatient patient! It comes hard if you are a very active person to have to now rest up for a while - so if mum is a fidget like me tell her to catch up on her reading and make the most of being made a fuss of by you. She might get low moments and this apparently is quite natural as well, it is because it all seems so strange and never ending, but she will be OK and she is so lucky to have you.
All the best…Leo