Hello, I was diagnosed with breast cancer in March 2025 and had a wide margin excision and reconstruction on 24 April.
On 1 May, I attended a haematology consultation at the same hospital and was diagnosed with JAK2 Essential thrombocythemia (ET) and immediately started on hydroxycarbamide and aspirin. I told both the breast consultant and haematologist of the others diagnoses and treatment plans but neither seemed interested in them.
My breast wound site has been slow to heal and last Tuesday (13 May) I reported to breast nurse that over the past few days Iād been feeling unwell and tired. When the dressings were removed it was clear I had an infection inside the breast and was prescribed āvery strongā antibiotics x 7 days. I again mentioned the Essential thrombocythemia (ET) treatment and they still seemed disinterested. The redness and soreness has continued and seems to be increasing. I have had spikes in my temperature and have felt tired and unwell. I will ring the breast care service tomorrow when they open but I am concerned that it does not appear that the two clinics have any communication with each other.
Has anyone had any any similar experiences in dealing with different speciality teams and does anyone have advice about what I can do.
Sorry this is so rambling.
Hi @maggieswesties gosh you have really gone through it havenāt you, a great big welcome.
Personally I write down everything I want to say, plus my symptoms, and their severity, fears, questions and practicalities before each appointment.
I do take responsibility for letting each specialism about other specialisms I am under and the medications I am taking.
Over the years I have learnt to be āpleasantly assertiveā and ensure I get appropriate responses.
If in doubt I email the specialisms so my concerns are clearly on record.
If I were still concerned I might consider asking for a 2nd opinion either through the NHS, any insurance policy or work benefit I might have, or privately at my cost.
Alternatively I might go through the hospitals PALS (Patient Advice and Liaison Service)
I will also copy your post to the Blood Cancer UK support nurses for you. @BloodCancerUK_Nurses
The main thing is that you really look after yourself and look after yourself.
Please do let us know how you get on,
Dear @maggieswesties,
I am sorry you are not being listened to by your teams. This must be incredibly frustrating for you and you are doing all the right things by raising this with them.
As you are currently taking hydroxycarbamide, have active infection and spiking temperatures I would recommend you speak to your medical team again ASAP. Have you let the haematology team know you have an active infection and fevers?
You may have already done so but please do reach out to the team/s today and make them aware of your increasing symptoms. You may well need different antibiotics or intravenous form. If you cannot get through please do ring 111 or attend your nearest A&E and let them know you are on chemotherapy tablets.
We can certainly talk things through in more detail and you can reach us on 0808 2080 888, but for now please do seek medical attention as soon as possible.
Best Wishes,
Heidi J (Support Services Nurse)
Thank you for your reply. I spoke to my support breast care nurse (who was on leave last week) and she has said she will make sure there is a doctor who will see me tomorrow - there is no one available today. I told her of my concern taking the chemo tablets may be having an effect on the efficacy of the antibiotics and she said that the two teams do not have dialogue with each other and that I should do this.
I called haematology this morning and explained my situation and concerns. She said the consultant was there and she would discuss this with him and she or someone else would get back to me. Iāve just telephoned again 4 hours later and left a message on their answerphone.
Oh @maggieswesties, I am sorry it all seems such a challenge.
Do you have a 24hour phoneline you can call? I would encourage you to keep a really close eye on how you feel. Should you spike a temperature or your symptoms worsen please do seek medical attention. Please have a low threshold for this, as you are on the hydroxycarbamide, your immune system is likely to be compromised meaning the infection could worsen.
If you are worried please take yourself to A&E.
Take care,
Heidi J (Support Services Nurse)
Thank you. I donāt appear to have a 24/7 phone line either for breast care or Essential thrombocythemia (ET). I live in Penrith, Cumbria so maybe those arenāt up and running. I also live alone and am 78.
The haematology dept did not ring back.
Today, the redness area does look as if itās spread further but I donāt feel too bad and would rather not join the very long queues at A&E unless absolutely necessary. Last Wednesday I was very concerned about the possibility of sepsis as I felt so ill and cold but have not felt quite as ill since - just not well if that makes sense. I will ring for an ambulance if I think things are moving in a negative direction.
Oh @maggieswesties I echo @Heidi-J-BloodCancerUK words.
Be ever so kind to yourself
Good Morning @maggieswesties,
I am sorry to read the team didnāt get back to you. I do hope your night was okay and you are feeling a little better today?
Do push on with trying to reach the team today.
Also as before if you are worried, feeling worse or spiking fevers then do call an ambulance like you mentioned.
I do hope you get some support today.
Best Wishes,
Heidi J (Support Services Nurse)
Thank you both for your support. I woke this morning feeling better in myself and there seemed to be some reduction of swelling, redness and soreness although it is still very swollen and inflamed. I got to the hospital early for my breast appointment and visited haematology and was able to speak to the person I had initial contact with yesterday. She said sheād thought she returned my call but got no reply (I missed no calls) but said she had talked to the haematologist who was surprised to learn I had been asked to liaise with him on whether I should be taking chemo rather than the medical breast care team. He did not advocate stopping the chemo. He had sent my Consultant an email in response and I found out later had also telephoned the nurses team before my appointment. I then attended the breast clinic and was very surprised that the nurse who originally noticed the swelling and redness said she thought it hadnāt changed in the last week. I told her that wasnāt at all right and that it had extended from around 2ā round area to spread across from the cleavage to the far margin of the breast at the other side around 7.ā It was also extended to cover the whole breast below the nipple instead of a central area. I also told her how unwell I had felt. When I saw a Consultant from a different team, the nurse repeated what she originally said to me and the consultant decided not to extend the antibiotics period. I am to go back on Friday to see my usual nurse who was brought in to be able to make a comparison. This consultant will also be available if necessary. I will be pleased and relieved to be seen by my regular nurse again now she has returned from annual leave and hope that the improvement I have experienced today continues. I have also decided to take daily photos just for my own peace of mind, if only to reassure myself Iām not losing my mind!
Ho @maggieswesties please do let us know how you are tomorrow and remember @Heidi-J-BloodCancerUK wise words if you feel any deterioration.
Please do really look after yourself
Good morning, today the swelling is much reduced and a bit less sore. Iām starting to feel much more myself. I had a call from the haematologists office this morning, just checking Iām ok. How lovely.
Dear @maggieswesties,
Oh I am pleased to hear that you are slowly feeling better, this is good news!
Do keep an eye on things and keep your team in the loop if anything changes.
We are very much here if you need us or would like a chat at any point.
Best Wishes,
Heidi J (Support Services Nurse)