Questions to ask the oncologist at first meeting

hi, hope you are recovering from the lumpectomy,  I had mine back in Dec and full node clearence, 5 of 11 were cancerous. I knew because of this I would have chemo and TBH I think the oncologists see so many patients they cover most if not all any questions.

I wasn't expecting to be looking at 7.5 months treatment, that surprised me, and that I would have 4 3 weekly cycles of one and 12 weekly of another.

I remember being shown on his computer the ct scan and he pointed out a couple of noncancerous issues he picked up. he explained the idea is for every possible side effect to be managed .  he gave me time to digest it all, I wasn't allowed anyone with me must have been so hard for hubby waiting I think I was actually gone 2 hours as I was then shown the chemo bays and met the senior nurse.

  I was asked if I would like my prognosis I said no, the fact that he said it was curable and not spread anywhere else was enough for me. was told stage 3a grade 2.  I had pain and uncomfortable feelings under arm for about 10 months but kept being told hormonal, despite many breast examinations.  I felt I had to blv all these doctors but I knew deep down it was cancer I was relieved to know the truth finally. I have 6 weekly chemo to get through, side effects managed by meds and some low blood counts but that's why I have weekly blood tests.  they may offer you a port or PICC line if you do need chemo. I went for PICC . ready for it to come out now!  you will be given a card with a 24 hr helpline on it , feels so reassuring. 

I have 15 x radiotherapy to have on a daily basis. it's quite a journey/rollercoaster/big pants time/whatever you wish to call it. you will get a ton of useful info and support from everyone on here good luck, I know it's hard but do try and get some shut eye and tell yourself the only way is up now! xxxx

Hi

I saw my oncologist  last week, I have triple negative  breast cancer, it was the surgeon  who told me that , the oncologist  didn't  tell me much really, asked alot about previous  health issues,  told me I would  have 6 months of chemo and he would give me the copy of sheet , explained side effects, told me not to work and I would be off at least 8 months., after chemo i would be passed back for surgery, then passed to radiologist ( all separate dept)Had to ask about picc line, he didn't seem to want to offer it , told me if wanted one, said would get call from chemo nurses and 2-3 weeks wait for chemo (, longer by another week if want picc  line!) once he had all reports  back, so came back home not much wiser. Really is down to your hospital  set up, hope u have better luck and it goes well for u xx

I also have TNBC. I had a wide area excision and sentinel lymph node biopsy in March. I had clear nodes but was referred to oncology because there was vascular invasion in the tumour sample. I had 2 meetings.

At the first meeting I went in with a long list of questions, fundamentally trying to get to the bottom of whether it was really necessary, and how they would manage side effects. I had a slightly larger tumour than you at 18mm, and was recommended 4 cycles of EC at 3 weekly intervals followed by 12 weeks of Paclitaxel, alongside 3 years of Zoledronic acid. I had expected this as it seems to be the usual treatment path for early stage TNBC. I was specifically concerned about long term heart damage from epirubicin and permanent peripheral neuropathy from the Taxane. Essentially it boiled down to screening my heart health before hand and that I am not diabetic, and being able to stop, or reduce doses, if side effects emerge. 

I also went through the recurrence risk and the impact of chemo on that - my big concern was it was a lot of pain for not a huge amount of reduction in risk  I didn’t hear anything to fundamentally change that - but they can’t really tell you whether you individually carry a high risk of recurrence or not. The one test that might (Mammaprint) isn’t authorised by NICE  

I asked whether there was a role for platinums (carboplatin) or keytruda - they said not in my case. I asked about whether there were any clinical trials I could join (apparently not). I asked whether there was benefit for my daughter in me being tested for BRAC1/2 (apparently not at my age).

I requested a portacath rather than a PICC to help me stay active. They agreed to this  

The second meeting was with the head of onco to follow up on the questions I didn’t feel had been satisfactorily answered. I asked her whether she felt I needed to do it. When she said yes, I consented. 

Have had 1 round of EC, 2nd lot goes in tomorrow. After chemo I have 5 days of radiotherapy.

All the best. 

Thanks very much for your detailed account hev999. I'm glad you had plenty of time to ask questions. I'm planning on writing my questions down tomorrow so that I don't forget anything. My husband also won't be able to attend as the letter asks for patients only. I've been told by one of the breast cancer nurses that the appointments are 45 minutes apart so I don't think he'll have to wait too long.

I must ask if I'll be given a tour of the chemo bays before I go for my first treatment, so that's a good point.

From what the surgeon told me I think my treatment will probably take me up to the end of this year but I'll know more tomorrow. 

Wishing you all the best x

Hi Coddfish and thanks very much for replying.

It looks like we are quite similar. Originally I was recalled from a routine mammogram because they could see an area of calcification. This area turned out to be DCIS and hiding behind it was a small lump which couldn't be felt. 

Obviously the thought of any side effects isn't pleasant but the one I fear the most is permanent peripheral neuropathy as I use my laptop a lot and also enjoy walking. So the thought of my hands and feet not working properly is very scary.

I asked the surgeon if I should be tested for BRAC1/2, as there is quite a bit of cancer on my dad's side of the family, and she's writing to the department that deals with this to find out. 

Can I ask if you have had any scans since your diagnosis? Lots of people in the group seem to have CT or MRI scans but I don't know if everyone has them or not.

Edit - Did you have the 4th Covid jab before starting chemotherapy? I was wondering if we had to have this because I think the drugs will compromise our immune systems.

x

My experience of the first oncologist appointment was that she was extremely thorough in giving me all the information. I did have a few questions on what food to avoid, whether I could work, hair loss etc but to be honest, she actually answered everything for me before I asked. She was amazing.

My advice is to take a notebook - there is so much info they give you, I wrote loads down.

Hi Sharonshaz39

Thanks for getting back to me but I'm sorry to read that you didn't have a very good experience when you saw the oncologist.

So far, everyone I've encountered at the hospital has been lovely so I'll keep my fingers crossed.

x

Hope your experience  is good, it does seem to be a bit of a lottery from hospital to hospital, its just my oncologist  experience  thats not been good,  breast Care nurses  have been great xx

Hi latchbrook

No I haven’t had any scans. I would imagine CT and MRI scans are only indicated when there is a suspicion of possible spread. In my case the 4 lymph nodes they removed were clear and the chemo is on the (hopefully small) chance that the vascular invasion has meant some microscopic cells are floating elsewhere in my body, but there hasn’t been time for anything to develop that would be picked up by a scan. They did do an ECG to baseline my heart before giving me epirubicin as it can have consequences for people with existing heart issues. Fortunately my heart is healthy. 

They didn’t advise a 4th Covid jab but they did say I would be eligible for antivirals if I caught Covid. As a chemo patient you can still access free LFTs. I was advised to be careful re contact on days 10-14 of the EC cycle, no specific guidance for Paclitaxel. I was pleased to find all my blood counts and liver / kidney function were all fully back to normal on the blood test before the second EC. Second EC hasn’t been much of a problem so far.  

Hi Coddfish

I saw the oncologist on Wednesday and I will be having an ECG before I start chemotherapy. I asked about a 4th Covid jab but he wasn't sure and said I should speak to my GP to see if I qualified.

I did ask the breast cancer nurse afterwards about scans and she said that they only do them if they think that there is a chance it could have spread as each scan subjects you to more radioactivity, which they obviously want to keep to a minimum. She reassured me that the oncologist I'd seen was very good and thorough and if he thought I should have a scan he would have arranged it.

Like you I'm having EC and then paclitaxel. He offered me the choice of having the infusions by cannula, PICC line or central line but said that my veins looked very good so I'd probably be okay with a cannula. I asked if I could start with a cannula to see how I got on and change if I didn't get on with it and he said that yes, that wasn't a problem.

Just waiting for appointment for ECG and appointment to meet chemotherapy team and get an appointment to start.

x