Hi
I had surgery 6 weeks ago for a 55mm ILC with micromets in one node. Since then I have seen the surgeon for one appointment after 4 weeks to be told she didn’t have the pathology results (they were sent by letter a few days later) and the oncologist last week to be told he didn’t have the oncotype results. I have a box of anastrozole which I was told not to take in case I need chemo but when I called yesterday to see if the oncotype results were back yet, the oncologist’s secretary said he was on holiday for 2 weeks but she couldn’t see an oncotype test hadn’t been ordered for me. I am very anxious. It’s been 6 weeks and I have spent approximately 8 minutes in the company of doctors and had no treatment since my surgery. I was promised CT planning and radiotherapy treatments, AIs and bisphosphonate treatments but nothing is happening at all. I don’t know who to talk to about any of this so called Genesis yesterday and was quoted 13k for private radiotherapy. I have started taking the anastrozole this morning because I think it’s too late to start chemo anyway? The earliest radiotherapy could start now is 12 weeks post surgery but I assume if I am having AIs and bisphosphonates that I am at high risk of recurrence and 12 weeks is too late? I have a card for a breast care nurse but that was from the surgeon and I was told I am not in her care anymore. I don’t really know who to talk to?
Just replying to offer support ( I’m not one of the breast cancer nurses). Sounds like you are on the rough end of some bad organisation from your team, unfortunately it can happen. Usually the post-op meeting doesnt happen until your pathology results are in - seems unusual have done this a few days before having them, in which case an MDT would not have happened. Were they unable to tell you at your appointment what grade and receptor type you had? Was there an issue with your wound that lead them to see you sooner than the MDT? It sounds like they have put you in the picture about your path results since as they have given you AI’s to take.
The oncotesting often takes longer, so this is not unusual. Take heart from knowing the biggest factor in stopping this disease is having the surgery, which you have got sorted in a timely manner.
It might seem a long time waiting for chemo after surgery, hanging waiting for results is anxiety provoking. Hopefully a BCN will reply soon and confirm that you are not at all late for having chemo - I am no expert, but I doubt it.
I hope you get your onco results soon so they can confim your pathway " to chemo, or not to chemo" is a big question to keep us hangining over.
Hello @cwn23
I think you have had a good answer already but just wanted to say in regards to your Breast Care Nurse service - as far as I understand it in the NHS you should have access to a Breast Care Nurse for at least 5 years because even if you don’t have chemo going forwards you will be on bisphosphonates and Anastrozole . It’s possible that in your area it may be one Nurse handling one aspect of care such as pre / immediate post surgery and someone else that you can reach out to if needed which could explain why you say you are no longer under care of that Nurse anymore. When I was in a position when I was stressed out because I didn’t know what was going on and felt like I’d been forgotten it was my BCN service that I reached out to and on the whole they’ve been pretty good. If I were you I would ring that number and ask whoever answers for help. I’m quite angry on your behalf that you have been left in limbo like this. Alternatively I’m not sure of the opening hours over Easter but if you don’t want to wait for a written answer the helpline is open until 4pm today 0808 800 6000 . Xx
Hi @cwn23
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Thank you all, I really appreciate the time people have taken to reply . My wound healed really well, I had a mastectomy and had the drain out after a couple of days, did all my exercises religiously and was driving after 10 days. The surgeon saw me after 4 weeks because my husband called to complain about my results results appointment being cancelled and the surgeon had the results printed out that day although no MDT had taken place because the results had just arrived. The oncology appointment was a waste of time really without the oncotype result, I just have piles of leaflets but no appointments booked and the secretary hasn’t called me back today after she said she would look in to it. I will call the BCN number I was originally given then and leave a message although I think they’re not back until Tuesday. I struggle with calling and am not really sure what I am supposed to be expecting or askimg for really. All the timescales I have been given so far have been at least 2 weeks longer than I was told so I have cancelled a lot of work I didn’t need to. I can’t have chemo and cancel anymore now hence why I have started the anastrozole, although it was extremely unlikely it would be recommended for me anyway as it’ lobular? Thank you all so much.
Hi @cwn23. It sounds to me that you are not getting the organised support. It is quite usual for pathology results to be late, so not surprised but to be told that the breast care nurse can’t help you is not right. I was told that i could ring mine anytime, even after all my treatment has ended. If i were you I’d be ringing the nurses after each week’s MDT meeting to see if you were discussed. Your hospital website should tell you which day they meet or the nurses can.
Once you have the results, the chemo, radiotherapy or further surgery can be organised. If you are post menopausal, AIs and biphosphates are commonly prescribed. You can take them while having radiotherapy. I think you should write down all your questions and ring up the breast care nurses. Tell them you need to know your plan and ask for timescales for appointments. While you’re waiting, we’re all here for you. X
Thank you. I think I got confused being told my care was passing to the oncologist. I am seeing people at 3 different hospitals, the nurse was at the hospital the surgeon was based at so I thought she just worked with the surgeon. I opted for a mastectomy with no reconstruction in the hope of saving time because I am more worried about losing my home than cancer at the moment. I will be at 54 days past surgery by the time the oncologist returns so have gone ahead and started the anastrozole. So I can let the nurse know that and ask her to try and get the CT planning organised I guess? The oncologist had mentioned that could happened as soon as the oncotype result was in. Thank you all, fortunately I have an emergency box of diazepam from when my 2 results appoinments were cancelled, gotta love my GP!
Sorry you are dealing with poor communication and delays in your results. Just to say you can still have your chemo start up to 12 weeks after your final surgery. Radiotherapy can happen many months later, if you need chemo first.
My hospital took 6 weeks to report my pathology results for my initial op, which showed close margins. So I had to wait another month, have a second operation, and wait a further 6 weeks for the results from that. They also forgot to request the Oncotype test for me, so that took a further month once I reminded them I needed it.
I was diagnosed end of December 22, and didn’t start chemo until July 2023. That took 5 months so I didn’t start my radiotherapy until almost a year after diagnosis, in December 2023. I took tamoxifen in between the various stages of treatment, because everything was so slow.
The waiting almost drove me mad at times, but I got through it in the end. I have been told my prognosis isn’t any worse despite the delays, so I hope the same applies to you.
I’m sensing the stress and pressure you feel under is perhaps as much to do with your personal circumstances as the delays you have had - which unfortunately are commonplace. There’s not a lot to be gained from pushing for appointments before results come in as you have found, unfortunately, results take as long as they take. Your delays, though not great, are not outside the realms of what goes on.
I can imagine the pressure can be huge for people stuck with financial obligations, not everyone can just take a year off work, every delay makes you want to scream "I need this sorted and be back earning before financial ruin hits!!"I got lucky, as didn’t need chemo, so managed to be back in work in 6 months. Also glad I get 6 months full sick pay - would of been stuffed otherwise, being a single parent, with a mortgage to pay. There’s a big difference and a whole lot more pressure when you get cancer before retirement, not much is ever said about such pressures, but we know they are there. Fingers crossed that your treatment is not prolonged, this disease can come sometimes just when its the last thing you need. You can expect that you will need to slow things down with work at some point. Even radiotherapy can wipe you out and not make you feel great for long periods after, chemo seems to be worse ( dont start me on hormone treatment effects - though some are ok with it) Be mindful of how much you are expecting of yourself going forwards, things are not going to be quite the same.
Hi cwn23
Thanks for posting.
It’s understandable you are feeling lost and anxious as you wait to find out if you need chemotherapy following surgery for invasive lobular breast cancer (ILC) . Chemotherapy is sometimes given in ILC.
Its not too late for you to have chemotherapy and if so, the radiotherapy would be given after that.
The timeline that @Briallen explains she had might also be helpful.
If you don’t need chemotherapy, then you would continue with the AI and bisphosphonates while you wait for radiotherapy. We are hearing of some radiotherapy delays for various reasons, but it’s likely your treatment team would continue to go ahead with this at 12 weeks if that is how long the wait is.
As @entropy say it can take a while to get the Oncotype DX and some other pathology results back and its important your team have all the information needed to decide on the right treatment for you. But waiting is incredibly hard and some women can feel a bit lost or abandoned during this time.
It might help to know that if your surgeon has said that an Oncotype dx test was done be reassured it would have been.
Also, as @JoanneN and @bluesatusma say you can contact your breast care nurses, which it looks like you are planning today. They are your key contact for this through all your treatments and for while after. If you leave them a message they should call you back.
It might also help to get further support while you wait through the range of services we offer. And you might like to know about the organisation Lobular Breast Cancer UK.
Again 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
Jane
Breast Care Nurse
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