Hello
This is a bit of a plea for advice….. I was diagnosed with DCIS in January, had lumpectomy end of March. At the time I was told it would be Radiotherapy after.
I saw Radiologist last week who went though the plan for treatment…… Then I raised the fact I have Neurofibromatosis (they should have known this!) and now it seems Radio would risk other cancer….. I feel I’m in an impossible position- risk the BC coming back or risk a different cancer. Has anyone else been in a similar situation?
Dear @worriedmum1, I am really sorry to read of your dilemma as a result of your treatment teams failure to take account of your NF1 when planning your treatment at the outset. Hopefully one of the BCN nurses will reply to you soon.
Whilst I do not have NF1 I do have a chronic health condition which, like you, was noted down at the start and then completely ignored until two different life threatening incidents occured. These were then acknowledged after being ‘looked up afterwards’ by my oncologist. My requests for her to liaise with my other consultant for advice were also refused.
It is fortunate that you spoke up when you did and encountered a medical professional who was aware of the risks before any treatment commenced.
As to the next steps your treatment team will undoubtedly have to review your case, probably at an MDT, and recommend a way forward to discuss with you. This should take account of your post op pathology - cancer type, grade, clear margins? Nodal involvement?
In my case I opted for mastectomy to eliminate the need for radiotherapy.
If you need someone to talk to this weekend then the Macmillan helpline is open 8am -8pm 0808 808 0000
The nerve tumours uk helpline may also be able to offer support.
Whether the Breast Cancer Now Someone Like Me service has a volunteer who went through treatment with the same condition that you could talk to I do not know but it would certainly be worth asking.
I trust that the right way forward for you will be found, keep advocating for yourself, and I wish you well. Love Tulip xxx
Hi @worriedmum1 ,
Thank you for posting. It sounds like a difficult time for you at the moment as you feel in an impossible situation between reducing your risk of breast cancer recurrence and the risk of developing another cancer due to having neurofibromatosis (NF1).
If you haven’t done so already, do talk to your breast care nurse about how you feel about the NF1 not being taken into consideration before your surgery, it’s important to discuss the concerns you have and to understand how best to proceed now. As @Tulip29 says, it’s good that this has now been picked up before starting radiotherapy so that you can work with your treatment team to come to the best decision for you.
People with NF1 may develop worse skin reactions from radiotherapy, and may have an increased risk of another cancer, as you say. However, there is limited evidence to know how likely this is. You may find this clinical study helpful to read, although this is a small study. If you have a specialist team for managing your NF1 they may also be able to provide some advice about the risk of having radiotherapy for you. It’s important for your breast cancer and NF1 teams to work together if possible, so that you can make the most informed decision.
Ductal carcinoma in situ (DCIS) usually has a low risk of recurrence, but this will vary from person to person based on several factors. Your treatment team will be able to discuss this with you based on your individual diagnosis. They can then clarify this risk with you.
You may find it helpful to post in this section of the forum to ask about others’ experiences of having breast cancer treatment who also have NF1. You may also find our Someone Like Me service helpful.
The organisation Nerve Tumours UK also has a helpline and may be able to offer further support.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
Our number is 0808 800 6000. If you have hearing or speech difficulties dial 18001 followed by our number and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
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Best wishes,
Cassie
Breast Care Nurse
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