Currently finding the NHS communication and support to be appalling. I haven't received any correspondence in months and I spend hours on hold just trying to find out when my next appointment is or if it has even been booked.
I'm 32 and haven't started a family yet so I would like to maintain my fertility if possible. To cut a long story short I eventually managed to get my ovary shut down injection arranged prior to my chemo (they wanted to give it to me on the day but I refused as from what I have read out there it is better to do it in advance of chemo so that the drugs are less likely to damage your reproductive system). Also, it made me feel pretty nauseous/hormonal so I'm glad I didn't have it on the same day as chemo.
I was told by my breast care nurse that a breast MRI was being arranged, however given that cancer was found in my lymph node I have tried to express that I would prefer a CT scan. I am a scientist and the logic is that that my cancer in my breast has been removed (shown by the biopsy results) and the possibility is that the cancer could have migrated (hence the need for adjuvant chemo). Given that I have the BRCA gene I have a higher risk of other cancers (ovarian is the most likely). I have spoken with my oncologist today who said that I don't fit the criteria for a CT scan. I had a breast tumour that is 1.5cm in size and a lymph node that was 0.7cm. I have spoken to plenty of people who's oncologist has just said 'why don't we give you a CT scan just to quell your fears'. He has now said that he doesn't even see the point in an MRI so is cancelling that. It just feels like I'm a number and a statistic to throw harsh drugs, not that I am a person who would like to know if they have cancer anywhere else. A pre chemo and post chemo scan doesn't sound unreasonable to me but maybe I am being dramatic. Has anyone else experienced anything like this?
I'm starting chemo tomorrow and haven't got a date for my bone scan either but my oncologist said this can be after chemo if needs be... this just doesn't add up in my mind.... I feel really scared and confused.
Sorry for the essay!
Hi Qwest and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read about the poor communication you've received and the not knowing if you should be having a scan or not. I was diagnosed with breast cancer back at the beginning of April and had a lumpectomy at the end of that month. Apart from the scans of my breasts before surgery I haven't had anything since and I'm currently nearing the end of my adjuvant chemotherapy before starting 2 weeks of radiotherapy.
I asked my BCN if I should be having scans, but she told me that if they were necessary the oncologist would arrange them but if he felt they were not needed then I wouldn't have them.
As you know, the online community is divided up into different support groups so I hope you don't mind me suggesting that you also join and post in the breast cancer group as you'll then connect directly with others who may have similar experiences to share.
If this is something that you'd like to do just click on the link I've created which will take you straight to the group. You can then join and start a new post in the same way as you did here and join in with existing conversations by clicking on reply.
When you have a minute, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
