I have had surgery and am waiting for radiotherapy to start after testing determined I would not benefit from chemo. My team have known my family history since day 1 in the breast clinic. Twice I raised the history and asked about genetic testing and they said they would speak to the genetics team and get back to me. After other delays I am now 6 weeks post surgery and my radio team have said they are referring me and I have just had a call from the genetics team saying that the radio team will hold off on the next stage of treatment until they have the results of the genetic testing (which my oncology dr did NOT tell me). The genetic testing will take 4 weeks plus to come back. I am frustrated that this has taken this long to happen and now concerned about more delays but also whether this is now going to change my treatment plan again.
Of course I understand the need to get my treatment plan right, but I’m also in a spin that this could mean my expectations and wrong but I dont know what the should now include. I have an appointment to talk through next steps with the genetic team tomorrow, but I woul appreciate any information about what in can expect to happen? Thank you!
My sister and I were referred to genetics but were told it would make no difference to our treatment plans. The referral was made in June, my sister completed her radiotherapy in July and I had surgery in July and again in Aug. I’m now on chemo. We saw the genetic counsellor in early sept and were told results would take 3 months so my treatment plan continues as normal in the meantime. Obviously there may be further options of preventative treatment in future if they identify a wonky gene, but they basically said to forget about it for now. Maybe if genetic results come more quickly in your area, that’s why they wait for them? I believe there are guidelines about how quickly radiotherapy needs to be done post surgery but I’m not sure what the timescale is so that might be worth asking. The waiting must be horrible for you.
Thank you so much, Pod123, that makes a lot of sense.
I’ve calmed down a bit now! I think I was mostly annoyed because the oncology dr was over an hour late (she said she had trouble parking) and then rushed through the appointment and said that I would have a the radio planning session in two weeks, which was then contradicted by the genetics team. In short- I think I just got cross and worried that things were being missed. But what you say re timescales absolutely makes sense and of course I can see how some results would mean other preventive options needing to be considered.
It sounds like you and your sister and your family must be going through it at the moment- I wish you the best!
Thanks. Yes, it hasn’t quite been the year we had planned for our family! My sister was diagnosed at a routine screening mammogram in Jan and thankfully after that I examined myself better and found my lump. If she hadn’t gone to the screening I’d probably still be none the wiser. Turned out mine was worse (3 lymph nodes involved) but at least we found it and hopefully it’ll all get sorted with chemo and radiotherapy. We had some other family history of breast cancer but they did say it depends on the ages at diagnosis whether it’s considered significant. They also said only 5-10% of the samples sent for DNA tests identify a genetic link, but it’s an evolving science as they’re now checking 16 genes whereas it used to just be 2 or 3. I’m sure your team won’t delay any part of your treatment unless really necessary and in your best interests. Hopefully you’ll get some answers when you talk to them tomorrow 
I too was referred but was told it could take up to six months for results….Nothing was mentioned to me about deferring my treatment and I’ve since had 8 rounds of chemo and then radiotherapy.
I’m confused, I don’t understand how the results of the genetic testing could affect your treatment at this stage if chemo has already been ruled out (it affected my chemotherapy plan, they added carboplatin, but I was always going to have chemo as I was stage 3).
Actually, now thinking about it, if you are positive they might suggest you consider preventative double mastectomy instead of radiotherapy. It must be the reason why.
Thank you all…really interesting, especially that it seems to be taking a long time for the results.
@Nat1984 - that is exactly it, I think. I understand they would always want radio to be the last treatment. I think I’m just frustrated this wasn’t explained to me. And, if the results were only taking a month they could have had them before my surgery, which may minimise the number of surgeries that someone (me?!) Might need so seemed arse about face iyswim.
Anyway- better to know in the long run so I will have the apt this afternoon and then call my BC nurse early next week to find out what the plan is, if the onco team still havent got in touch. Maybe the tamoxifen is giving me the rages already! 
Hi waitingwaiting
Thanks for your post. It’s understandable you feel frustrated about the time it has taken to be referred to the genetics team which has meant your radiotherapy is being put on hold.
As @Nat1984 mentions, the reason for pausing the planned radiotherapy treatment is for the genetics team to determine your risk and whether they need to talk to you about additional ways to manage your risk of breast cancer.
You do not mention what type of breast surgery you have had, or your age. Depending on your genetics assessment and any genetics testing results, and the type of surgery you have already had, risk reducing surgery might be suggested. For example, surgery to remove all the breast tissue on both sides. In some cases, if preventative surgery is recommended, it may mean radiotherapy can be avoided, but your treatment team will be able to clarify if this is the case for you.
As @pod123 says, if you still need radiotherapy, your treatment team will not want to further delay your radiotherapy treatment~~.~~ Guidelines recommend that ideally radiotherapy should be given within 12 weeks following surgery. Based on the number of weeks you mention since your surgery, this should mean you will hopefully be within this timeframe once your genetics testing results are back. You also mention you are on tamoxifen which will work to prevent breast cancer recurring whilst awaiting your genetics result. However, do talk to your treatment team about your concerns in relation to delays in having your radiotherapy and how genetic testing results might alter your treatment plan.
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