what to ask at follow up apt after surgery?

Hello ladies ( and any men here too)


I was diagnosed late november with HER2 ER+ IDC grade 2. had lumpectomy on 3rd jan including sentinel node biopsy. Have got my follow up appointment this coming wednesday.


i was wondering if anyone here can advise what questions they asked (or wish they’d asked with hindsight) at their follow up appointments. (Ten years ago i had a laparoscopy to diagnose and treat endometriosis and the endometriosis forum was great, lots of tips on what to ask after your laparoscopy etc, which I wouldnt have thought of). i will of course ask about the staging and whether lymph nodes re clear etc.


i have been told i will probably have herceptin and chemotherapy. i am particularly interested to hear from anyone who declined chemotherapy and chose other methods of treatment. i dont fully understand why chemotherapy is used if tests show that surgery has removed all the cancer. i am still new to all this. 


i am 41 with 3 children (8, 5 and 3).


i am seeing a herbalist for treatment with herbs, having acupuncture and seeing a nutritionist tomorrow (at the london Haven), have already made changes to my diet and feel much better for it.


thanks in advance for any advice.


carolyn, east london

Hi Carolyn,

Hopefully someone will now see your post and answer your questions.  Could I suggest that you also post in the Going through treatment forum where you will probably get more replies.  I’ve put you the link below.


Also, if you would like to give your freefone helpline a call, the staff will be only too happy to talk to you about your treatment plans.  0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

Take care.

Jo, Moderator

Hi  Kerelene,


I’m very sorry to hear you are going through this. To answer your question about chemotherapy, surgery removes all VISIBLE signs of cancer, i.e. your lump. But there could possibly be minute cancer cells floating about that can’t be seen. There might be some in your lymph nodes or in your blood stream. Sometimes even in the scar tissue where you had your lumpectomy. This is why chemotherapy is usually advised, especially in younger women like yourself. But if your cancer was HER2, you can’t have Herceptin without chemo. I notice you are also ER positive, which means you will probably have Tamoxifen after chemo. If it wasn’t for the HER2 diagnosis, you could have considered just having radiotherapy and Tamoxifen, but I feel you will be strongly advised to have Herceptin and thus need chemo. 


As for questions you could ask, what about the size of your tumour, or whether the grade has changed since surgery. Sometimes a grade 2 turns out to be a grade 3. Did they get clear margins around your tumour? If not, will you need a second operation to remove a little more? 


Hoping your follow up results are good. Sending hugs and best wishes.


poemsgalore xx