Hello Kateday,
Sorry to hear abot your diagnosis. It is sad to hear about your mum and gran, the impact that this must have had for each of them and also for you.
1. Based on your family history, it is hardly surprising that you are concerned for your children. Of course the concern needs to be about you at the current time, but I hardly think it would have been detrimental to your treatment to give you a fuller verbal explanation!! Perhaps they are waiting for the full pathological results of the removed tumour before they advise or pursue this(as you say you are still awaiting Her2 test results). Genetic links are more prevalent in triple negative breast cancer. Without the Her2 information, they can not confirn the Triple Negative Status.
However, if it preying on your mind, then there is no harm contacting a BCN (or whoever your main contact is) and asking for a more thorough explanation. Not having a thorough explanation at the current time may be causing you unnecessary anxiety.
2. I have had chemo, surgery (mastectomy), radiotherapy, targeted treatment (Herceptin), and I am having hormone treatment (Anastrazole) and 6 monthly Bishphosphonate infusion (Zometa). You would not think I actually had totally clear lymph nodes, no vascular invasion, as well as having a "complete pathological response to chemo!!! And no doubt I am a bit of an oldie compared to you!! Well at least if it returns, I can at least say “I threw everything at it!”.
Anyway, it is not unusual to have surgery, radio and chemo. Radiotherapy almost always accompanies lumpectomy surgery (and at times mastectomy). To chemo or not, may depend on a number of issues. It may depend upon the type, grade, stage, and particular sensitivities of the cancer. Some people will undergo a test, and then base on those results chemo may be recommended or not.
From what you have written, I am assuming your cancer was not hormone sensitive (“I can’t take medication to reduce the risk of return”). You say you are awaiting test results of the Her2 testing. If this is negative, then your cancer will be classed as Triple Negative. As there are no specific targeted treatments for Triple Negative, it is not unusual for chemo to be recommended. However, age, size, stage and grade of tumour etc may be taken into account to guide the recommendation. To the best of my knowledge, Triple Negative Cancers are usually grade 3 cells (fast growing cells, “aggressive”,). Also to the best of my knowledge, chemo can be very effective with Triple Negative Breast Cancer.
If you cancer is classed as Her2 +, then there is a targeted treatment called Herceptin that can be added to the arsenal. Her2 sensitive cancers are also classed as grade 3 cells. It is very unlikely to be given Herceptin without having chemo as well. Herceptin usually starts with latter chemo treatments and then is given as an injection every 3 weeks (usually into the thigh) for up to a year/18 treatments at the current time (subject to personal tolerances of herceptin).
However, the type of chemo recommended for Triple Negative and the type of chemo recommended for Her2+ may not be the same so it is important to have the full information before going ahead.
I hope that my rather long response has not caused any additional worry or concerns and has given you some relevant information.
My advice would be to contact BCN (or other contact) and say that you wish to clear some matters up and ask specific information about your type of cancer. I am assuming you will be notified when the full pathology results are in so these can be discussed with you. You could ask to have a copy of your Pathology results. If you are unclear what the next steps are or have no next appointment planned, then ask the BCN what the next stage in the treatment plan will be, when the next appointment is and what is it for.
By the way, before any of my appointments I use to write down all the queries in my head and then assemble them into a meaningful list ready to drain the brain of the medical person taking the appointment. Also remember, the good thing in England (not sure about everywhere else - certainly does not bleeding work in Scotland the same way!)), you can ask for copy of letters written after each consultation at the actual consultation as a right. You can also ask for test reports. These are very good for keeping track of discussions, information, treatments and agreements.
Take care Kateday and all the very best to you and your family,
Chick X