I was told a year ago that I had Stage 4 secondary breast cancer because after finding a breast lump, a CT scan showed multiple lung lesions which I was told were suspicious for metastasis - a lung biopsy was deemed too risky.
I've been on chemo tablets and the primary lump has responded, but the lung lesions showed no change on subsequent scans so I asked for further thoughts on the matter.
I eventually had a lung biopsy a month ago and got called in for the results. The lung lesions are Adenocystic Carcinoma, which I was told is a rare cancer linked to the salivary glands. I was informed of this three weeks ago, and sent home to wait for someone to get in touch. The only advice I was given was 'don't Google it'.
Does anyone on here think it's fair to be told you have a rare disease and then sent home without any further contact. I have rung several times this week trying to chase up but so far had no confirmation that any appointments have been arranged for me.
To say it's bad for the mental health is an understatement.
Any advice please? Thanks.
Hi Saffa and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you've had a long and difficult journey so I can understand you wanting to get advice.
The online community is divided into different support groups so I'm going to recommend that you join the adenoid cystic carcinoma group which is a great place to ask questions and share experiences with others who have a similar diagnosis to you. You may also want to join the secondary lung cancer group as well.
To join, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
When you say that you have rung up several times this week is this to speak to your CNS (cancer nurse specialist)? If not, have you been allocated one as they should be your point of contact for any questions you might have.
If you haven't been allocated a CNS then give your consultant's secretary a call and she should be able to put you in touch with one, or let you know if any appointments are in the process of being made for you.
It would be great if you could put something about your diagnosis and treatment to date 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.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
