Hi, i am new here. Had masectomy 2021 lymph nodes removed. On anastrozole and ibrandronic since. Extremely fatigued all the time. Arm which has lymphodema almost unusable due to extreme pain when i move it. Cannot carry anything with that arm.
Is this normal? No one said anything about this at the start of my journey.
Now saying that pain in arm shoulder can be small breaks in bones caused by drugs.
Is this correct?
Not much info from medical team now. All appointments are telephone only with my GP since covid. Not sure if i should contact my cancer team at hospital as now on the survivor programme, so dont want to waste their time. They are a brilliant team.
Please help. Thankyou
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Hello Helen. You should be getting help with the lymphoedema, pain and fatigue. What resources do you have in your area? I have a hospice locally that treat lymphoedema. You don’t need to be terminal to use hospice services. If you’re not aware of local services, contact the hospital team. Don’t worry about being a nuisance as you’re certainly not that, just someone who needs help and signposting to services. These days, assertiveness is often needed to get the help you need. Cherish yourself by raising your profile.
Good luck x
Hello @Helen2021
Please don’t ever consider yourself a “burden” I know it’s hard not to when we are constantly fed news about the NHS.
The services are still there and you are absolutely entitled to be helped especially if your quality of life is being affected. In the first instance I would suggest ringing the BCN nurses as they will be able to give you much more knowledgeable advice about your specific issues and how to access the right people for maybe reviewing your medication
AM xxx
Hi @Helen2021 just to back up what Chrissy and AM have said, get in contact with the BC nurse at the hospital. I say this because 4 weeks ago I had an issue with Letrozole and pain (possibly mets), was told by the GP to contact the specialist nurse even though I’d been signed off on to the self-referral protocol. I did so and the MacMillan nurse working with my oncology team made it VERY clear that, for the next four years at least (1y into 5 on Let) they are responsible for my wellbeing. She said if I ever thought “ h’m that doesn’t feel right” or “uh oh that shouldn’t be happening” to go straight to her and cut out the GP.
I have a fear of being “the girl who cried wolf” but they want to nip everything in the bud because, if left, they are potentially dealing with something more difficult. So please contact your nurse specialist. I even have a call with the oncologist in a week to talk me through the things the nurse didn’t know so miracles do happen.
Hello Helen2021
Thank you for posting. It sounds as though you are having a difficult time. As @Chrissy19, @adoptedmanc and @Tigress have said, your treatment team and breast care nurses are there to support you and it would be a good idea to call them to discuss the symptoms you are having.
Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body. This can happen as a result of damage to the lymphatic system following surgery or radiotherapy to the breast or armpit (axilla). It’s not clear why some people develop lymphoedema and others don’t but lymphoedema can develop soon after treatment or may occur many years later.
If you’ve not done so already, it’s important to get your lymphoedema assessed by your treatment team. They can refer you to a lymphoedema specialist nurse who can help you to manage and improve the symptoms. They can also assess the pain you have in your shoulder and advise on the best way to manage this.
Our Living with lymphoedema booklet explains more about what can be done to help. You may also find it helpful to listen to our podcast Living with lymphoedema.
Experiencing fatigue (the feeling of tiredness or exhaustion) during and after receiving treatment for breast cancer is very common. Many people find that they start to get their energy levels back as time passes after treatment, but for some fatigue can continue for months or sometimes years and we often hear from women that fatigue can have a real impact on their day-to-day life.
Fatigue is a known side effect from anastrozole, and other factors may also contribute, such as: the emotional impact of a breast cancer diagnosis; altered sleep patterns; reduced activity and poor diet. When you speak to your team, they may suggest you have some blood tests to rule out factors such as anaemia, which can contribute to fatigue.
You may be interested in the Macmillan booklet Coping with fatigue (tiredness).
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events. For more details about all of these services, please see the information on the link.
Our Moving Forward services may be of particular interest for you. The course is open to people who have had a primary breast cancer diagnosis and have finished their hospital-based treatment within the last two years. You can find out more and register for the programme on our website.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Cassie
Breast Care Nurse
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