Options post surgery

I am 10 days post surgery for 20mm (could be larger as one scan showed 27mm adjacent to nipple at 12 oclock) IDC. ER8, PR8 HER2 negative. Grade 2 possibly 3 but graded as 2 for now. No sign of spread to lymph nodes on ultrasound scan but SLNB taken during surgery, a total of 4 nodes.

I also have had succesful treatment on cervix in May this year for CIN2/3 cells. Whilst they have said no direct link of BC to CC it naturally concerns me I have had early stage cancerous cells on cervix too over last 12 months.

Pending results from surgery, the initial proposed treatment route is radiation and hormone therapy. But whilst for some this might seem strange (as most people like I would prefer to avoid) I want to go hard with this to get control and consider the option of chemo.

I have not been offered further scans as yet but will most likely be moving from NHS care post surgery to private healthcare that I get through work who have kindly offered to pay excess to transfer me across should I want to.

I am asking a little advice on what I can read up on to fight my corner for what I want because so far after delayed operation due to doctors strike and change in consultant caring for me twice in 6 weeks my voice and concerns and desires are not been heard. Is chemo an option that might be offered? I have read so much about the impact of hormone therapy alone which I am dreading.

Thanks for help. I feel very alone right now. Recovery is hard. I am usually very active in the gym but been in a lot of pain and sore from swelling on both lumpectomy and SLNB sites despite complete rest and support from family. The mental impact of this is very very real. I feel so vulnerable.

Bx

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Hi rjr28,

Gosh that’s so tough what you’re going through.

I’ve been getting treatment for almost 1 year, and just found out 3 weeks ago that things are clear and good response to all treatment… the waiting is the hardest…

(I’ve had 20 lymph nodes positive, ER+veHER -ve.Chemo/Mastectomy ANC clearance/going for radiotherapy/meds).

Your oncologist should be able to explain if chemo is an option or why it is not. In my experience, there are lots of treatment options and more advanced medications. I didn’t think my prognosis was good but now it’s looking more hopeful. I’m thinking of you as you wait to hear . What an absolute nuisance being moved about consultants. Keep us posted ! Jox

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Hi, that is so tough, two separate cancers. I was not offered chemo for which I am extremely grateful. If they don’t offer it, it is because it wouldn’t help. You can ask them to explain their rationale but it is a balance between harms versus benefits from chemo. They do seem to offer it even for very negligible benefits. Just ask them to explain the reasons for your treatment plan. Good luck x

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Hi rjr28,

Thank you for your post.

It sounds like you have been experiencing a lot since your diagnosis of breast cancer and recovering from surgery. It can be difficult when someone is usually very active to deal with resting and accepting help.

Emotionally it can feel overwhelming and coping can be difficult. It is understandable you want to do everything to reduce your risk of breast cancer in the future. It is important to explore all your treatment options as @newbieweek2chemoec says with an oncologist. You mention you’ve recently had successful treatment on your cervix for early-stage cancerous cells. It is natural to have concerns even though there are no links with breast cancer. As @newbieweek2chemoec says it’s tough what you are going through.

You mention you have concerns about delays in treatment and changes in consultant. The best people to speak to about this are the people involved in your care including your breast care nurse, hospital doctor or GP. This can be difficult if you feel you are not being heard. The Patient Advice and Liaison Service (PALS) can provide you with information and support. This is a confidential service for patients, their families, and carers. They can help resolve concerns related to health matters, explain, and handle complaints procedures and use feedback to help influence change. PALS work with staff, managers, and if relevant, external organisations to provide support and advice to people concerned about the care they are receiving.

You can find your nearest PALS office on the NHS website..

You ask about whether chemotherapy is an option. Wherever you have treatment, your care will be tailored to your individual situation, and whether you are offered chemotherapy depends on a number of factors including the grade, size and stage of your cancer.

It might help to know that your consultant may also use a computer programme such as NHS Predict to estimate what benefit might be expected from treatments such as chemotherapy and hormone therapy.

It can be difficult if it’s not clear if chemotherapy may be of benefit. It’s important to have as much information as possible to help you make your decision. It may be useful to take a list of questions to your appointment with your specialist. Follow the information for questions to consider.

If the benefit of having chemotherapy is unclear. Genomic assays such as OncotypeDX may help with this. These are tests that look at groups of genes found in your breast cancer. They can identify how likely the cancer is to return (recurrence) and if you are likely to benefit or not from having chemotherapy.

It can feel isolating going through treatment for some people, connecting with others who are in a similar situation can help reduce feelings of isolation, as well as anxiety or fear. Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

We offer a range of free supportive services which you may be interested in. They include face to face and online courses and events.

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.

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Best wishes,

Helen

Breast Care Nurse

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