Hoping to starts Rads mid Oct which will be more than 3 months post op and positive Lymph node diagnosis.
I have had planning appt…I think…I am blessed with 3 tattoos and had a CT scan. Before the scan I met with the radiotherapy oncologist specialist who ‘persuaded’ me to have radiotherapy to the breast, armpit, and collarbone rather than further surgery to the armpit…I wanted the nodes out, the cancer removed if it was there…it hadnt shown on U/S prior to op so was a shock. The oncologist gave me the stats for rads over surgery and although I was hesitant decided on rads.
He took me through to the radiographer and left. She had a consent form for me to sign and i queried it as it did not mention the armpit…she said it didnt matter they usually caught the armpit…I dont usually speak up but i did…i said i didnt want the armpit ‘caught’ I wanted it treated and that I had foregone surgery…she said dont worry the oncologist will oversee so I signed the consent. I am now thinking i should have stood my ground and made sure the armpit and collarbone were included on the consent.
I didnt want to make too much fuss…i had to chase the hospital following my first onc appt in Aug and finally started Hormone therapy last thursday, but at the root of all this and eating me up is the fact this cancer could still be in my armpit or even elsewhere by now…original dx was grade 2 tumour 11mm PR&ER+ and HER-
I do not think you are panicking over nothing. If it is any consolation, I would feel exactly the same as you and would want to see details of my collarbone and armpit included on the radiotherapy consent form.
The radiographer may be correct saying the armpit is usually caught but does she not understand that patients want much more reassurance in these situations.
Radiotherapy is a serious treatment to extremely precise areas of the body. As such, you’d expect the hospital to include those precise areas written on the consent form.
It is very important that you have peace of mind going through your planned treatment and this niggle in your mind needs to be sorted out before you start your radiotherapy sessions.
I would suggest ringing your Breast Care Nurse to let her know about your concerns and ask her why the collarbone and armpit has not been included on the consent form. Considering you would have preferred surgery rather than rads to the affected nodes, I think the radiotherapy oncologist should have gone the extra mile to give you all the reassurance you need including seeing all the areas to be treated written in black and white.
Once you start radiotherapy sessions, the accumulative treatment plus going to the hospital every day makes you feel very tired. As you know, when you are tired, issues can sometimes seem even bigger. That is why I am recommending you get the reassurances before you start radiotherapy.
Please don’t feel you are making a fuss. You are just seeking reassurance which is vital during BC treatment and afterwards on your road to recovery.
Magical moon is right, you should definitely be assertive BEFORE the first rads appt. timing is very tight for the rads team & you are in & out in just a few minutes with a long queue behind you. At our place, rads was entirely separate from the BCN, so I advise you to call the oncologist’s PA & ask for the name of the PA of the radiotherapy consultant & contact him/her that way. In my case, my onc did both chemo & radio so I already knew her. My BCN was not that responsive, whereas I found messages direct to the consultant via their PA worked. I did e-mail the onc direct after my first chemo. All hospital e-mails are the same format, so if you know your BCN’s you can work out your consultant’s. I got told politely to go via the PA in future, but my message, like yours, something that urgently needed fixing before the date of the next chemo, did get through & was acted upon.
In terms of surgery vs radio for nodes, they have done a lot of research & the outcome is the same, without the need for painful surgery for you & the risk of lymphoedema. However, if you don’t feel comfortable about it mentally tell them you would like another chat. When you have finished treatment it’s important that you feel you’ve done everything you could to give you peace of mind.
Hi Bella. I hope you can access the support you need. The support line here may be able to give you an idea of how to access advocacy in your area or Macmillan may be more area specific. You’ve had other wiser words already on this thread. Looking forward to seeing you in the October Rads thread xx
thank you all for your kind words and advice, I will speak to the radiotherapy oncologist’s PA, I have spoken to her before when I hadn’t heard from the hospital following 1st onc appt, I just want the i’s dotted and the t’s crossed.
As soon as I have my date to begin, I shall jump in that months thread, today in the post I have had an appt for Nov 4th, with the oncologist, so think thats good sign things are moving.
well i plucked up the courage today to ring the hospital …again. I spoke to a lovely receptionist in Radiotherapy who took me seriously and agreed to speak to my oncologist to check the notes.
Within the hour, his PA was on the phone apologising profusely and saying they had got it wrong, i did need lymph nodes and collarbone treated as well as breast. She passed on the oncologists apologies as well said I may need a couple of extra measurements before starting…which is 20th Oct…and possibly another tattoo(join the dots!!!), and said she could hear the relief in my voice. The nicest thing was that I had asked they leave a msg at home as I was at work and she had taken the time to find my work number and call me. Further to that I have also had the GP on the phone following the hospital calling them and my 2nd zoladex is booked and exemestane now on repeat…and if I needed anything at all, let them know…I am so reassured by this and feel so much better…so thank you all for your advice xxx