Good morning
I have a quick question how often do you get to speak/see your Oncologist, I told I was in remission every thing looked ok in mid 2024. Oncologist said he would see me regularly, I saw him in January as I started having a pain in my breast , he sent me for 3 tests scan,mammogram and ultrasound. This was in January I got my appointment when I got there no tests were going to be done I saw a Dr. a breast surgeon before he saw or spoke to me he cancelled the tests. I told him about the pain he said it was expected I had to put up with it. Since that day I have heard nothing from anyone. Is this normal to be left with no contact, I was due to go on holiday in May 24 but my husband said he didn't think I could manage the trip so we cancelled the trip.
I still have the pain I tried phoning Macmillan I explained about pain all she did was shout at me that I didn't have breast cancer. I told her I know I don't I had NHL it was in the lymph gland but had travelled to the breast. I tried asking he if there was a cream or something to help with the pain. She ignored my question and asked if I had lost weight I said a little she then referred me to a dietitian and hung up.
I am sorry this is so long but I am still in pain and have seen and heard nothing, I was very upset and I am being told by my family to chase things. Between the breast dr and Macmillan I feel dismissed and spoken down to, who do I go to for advice I thought that was Macmillan was there for.
Thank you for any advice you can give me.
Hi again Nan2pop and good to hear from you but sorry to hear about the challenges you are having.
I am actually surprised that you were not transferred to Heamatology as they are the experts in all things blood cancers including Non Hodgkin’s Lymphomas.
As for the reference to Macmillan, I can only assume that you are talking about a CNS (Cancer Nurse Specialist)…… if this was a Breast Cancer CNS….. apart from you feeling that you were not heard and supported….. a Breast Cancer CNS will have very little understanding about Non Hodgkin’s Lymphoma.
It’s important to note that not all hospitals/cancer units will have Macmillan CNSs (as hospitals just don’t have then) but may have CNSs as regular members of staff…… it’s not the same across the country…… it took me 14 years before zi had a CNS!!!!
Over my 25 years journey with my 2 types of rare T-Cell Non Hodgkin’s Lymphomas I was only ever seen by my Dermatologist over my first 14 years (my first type of NHL was a rare skin Lymphoma)…… I was seen by my Oncologist for a month to over see my Radiotherapy then my main 2 years NHL treatment was overseen by a Haematologist and then Stem Cell Transplant team.
It sounds like you may have fallen through the cracks in the system…….
Over my first 14 years as a minimum I would see my Dermatologist every 6 months…… and more often when I was in treatment…… I have never seen my Oncologist again but there was no need as my Haematologist took over so I was seeing them every 3 weeks during treatment then as I went straight to Stem Cell Transplant…… post my 2 Stem Cell Transplants (Oct 2015) I was seen weekly for a few months moving to monthly then 3 monthly…. then after 2.5 years after my second Stem Cell Transplant I was discharged……. But for the past 6+ years I have a yearly full bloods done through my GP and a phone call with a Late Effects CNS.
Through all my main treatments my Macmillan Heamatology CNS has been excellent, very supportive…… we called her as our mother hen.
I think you need to find out who your primary Lymphoma care is under?…… as 99% of the time this would be a Haematologist.
Hello Jeannette Nan2pop
My name is Steph and I’m part of the team who look after the Online Community here at Macmillan.
I was so sorry to read that you're in pain, uncertain about your ongoing care and feeling dismissed and spoken down to. No one should ever make you feel that way.
Everyone should get the very best cancer care and treatment, no matter what. If you’re worried about the care you’re receiving, or feel you’re being treated unfairly, Macmillan can help:
Whilst you're waiting for other members to reply, I hope you don't mind me popping in here to make sure you have the right support in place.
We hear that last time you saw your oncologist, further tests were organised but then cancelled and that you're not sure why. We would encourage you to contact your GP or Cancer Nurse to request a new appointment. You should ask for the continuing pain to be investigated and for your all your questions to be answered.
We're also keen to find you the right support with how you're feeling after speaking to someone on the phone. No one should be shouting at you, dismissing your concerns, or ignoring your questions. If you called someone at your local hospital, we would encourage you to get back in touch to share your concerns. The Patient Advice and Liaison Service (PALS) team can help if you're not getting the answers you want.
If you would prefer to make a complaint directly to Macmillan, please find more information here.
I want to reassure you that Macmillan are here to support you. Our Support Line nurses work separately to the NHS and don't have access to your NHS records. However, we're here for a chat, to support you and answer any general questions you may have. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
I hope this information is helpful, but please do give the Support Line a call if you'd like to talk this through further.
Hi Nan2pop …… that is certainly true that would look for all areas of Macmillan to be supportive but unfortunately like most organisations, nothing is 100% perfect.
Have you ever been seen by a Haematologist?….. these are the Lymphoma experts and most likely the best people to move this all forward for you.
Ok if I was in your circumstances I would suggest that you or your GP contact the Heamatology department as they are the experts and best positioned to help you out.
I know from many challenging episodes over my years, not just with my 2 types of Lymphoma but also other health challenges…… you do need to become your own advocate at times to ensure the system does it’s best for you.
