@naturaljazz yes, I am seeing my oncologist privately…not that is making huge difference. He has his NHS clinic in the morning and his private in the afternoon. He’s been really patronising and I had to advocate for myself a lot. It doesn’t matter that I am seeing him privately he still has his NHS hat on if you know what I mean…
Re Letrozole: sorry to hear about this and tell me about it but we don’t need to suffer in silence…as @Tigress said you can always contact the BCN or the oncologist’s secretary for sure. They have one even on the NHS…
I haven’t seen an oncologist at all during my treatment. My breast surgeon said there’s one on the Multi Disciplinary Team and he/she takes part in the case discussion in deciding the best treatment and approach, but I didn’t get to see him/her personally.
I’ve had a mastectomy, lymph nodes clear and now Letrozole for 5 years.
I’ve asked a couple of times at my appointments and via my BCN to see the oncologist but each time told it wasn’t necessary as the oncologist has been involved via the MDT.
At my “end of care” meeting with my BCN (about a month ago) I mentioned again that I was disappointed about not having the opportunity to talk through some questions and concerns with the oncologist - not just about Letrozole but as I’m Lobular I wanted to know about the best way to approach ongoing monitoring. I’m also NPI 3.4 which is right on the cusp of Good/Moderate prognosis and I’d like to understand that more in relation to me specifically rather than just a number on a scale.
No luck though, was just given same response - oncologist appointment not available to me as the MDT included an onco.
So, I’m now back in the general system ie. annual mammograms and if I find anything suspicious go back to GP. That bothers me as the system is designed for Ductal, Lobular presents and behaves differently and I’d like to talk about what is the best pathway specifically for me from here on.
I wasn’t offered the Oncotype DX test either and again on enquiring about it I was told the MDT had decided it wasn’t necessary. I understand the need for the NHS to manage the budget/testing costs etc but I fitted the criteria for it and would have liked to have had it.
Upshot is, oncologist not available to me on NHS . I have now made an appointment to see a breast cancer specialist oncologist privately, am seeing her at the start of September, hoping to get answers to my questions (including Letrozole) , a discussion about the appropriateness of the Oncotype test and a view on what I need to be asking for and pursuing from now on. The cost is £225 for initial consultation.
Good luck in pursuing your oncologist appointment.
I am 74 and had BC return after 14 years.
I had a mastectomy and reconstruction, which went well, I can’t fault the care I had. No sign of spread into lymph nodes thankfully.
I had the tests offered to see if it may return in 10years again. That was positive. I had 8/8 oestrogen, 4/8 progesterone and negative HER.
I was offered and had 4 chemo treatments and hormone therapy with Zolendronic Acid infusions every six months for two years. All for preventative reasons.
I am on Letrozole, but after a week my lower legs started swelling. I was tested for DVT but it was negative.
Has anyone else had this side effect?
My BC said I could take a break from in for a fixed period to see if it is from Letrozole, if so she would put me on something else.
I’m 54 diagnosed with primary bc a few months ago and had lumpectomy and snb 8 weeks ago. No spread and clear margins so I know I’m fortunate. I’ve been on Letrozole since diagnosis around 3 months ago - achey but manageble, no headaches, sleeping pretty well. My challenge is with the brain fog, memory and processing speed seems to have slowed down. I just don’t feel like myself and have decided I’m going to stop taking it. Given my results and nhs predict saying only 1.7% difference over 5 years I think I’m going to go for quality of life. I’m frustrated as all other side effects are manageable. It just seems to affect everyone differently so getting a straight answer is harder. Good luck with your journey
Good luck not taking Letrozole, I’m not taking Tamoxifen & am always looking for posts from people not taking the blockers. I’m taking less risk because I’m already 76, but still worried about cancer coming back, especially secondary cancer.
Good luck to you too …its hard isnt it…you have tomake your decision and be content with it…i always take the view thats stats are just that and i could be higher or lower risk…then because u am not a risk taker i go with what if i am higher risk …so will always take whats offered…but we are all very different i get that… ive been on letrozole 4 years …starting to take its toll but i will keep on… .i got a recurrence after 6 years and had been on tamoxifen for 4 of those years so hoping for better odds with letrozole…wishing you well
Hi @bee2 I can’t believe that you didn’t have an oncologist on the NHS. That’s absolutely unbelievable and definitely not right…it’s just disgusting how they treat people… apologies about my language…
I also had lobular BC and know how different it can be…I was stage 3 very big tumor 12.5cm on the MRI scan and I didn’t even have a lump. They were thinking maybe having a lumpectomy but I ended having a mastectomy, full lymph node clearance with 3 positive nodes, 6 months of gruelling chemo, 15 radiotherapy sessions, 6 monthly Zoledronic acid infusions for 3 years, 3 monthly Prostap injections like forever (I was 43 years old so they had to put me into the menopause and keep me there), Letrozole for 7 years, 2 years on Abemaciclib…just finished it…
I went privately after I got my diagnosis…used my private health insurance through my company…honestly, it can be so hard to get an oncologist who understands you and treats your whole body not just the bloody cancer…they’ve all got their NHS hat on…I had to advocate for myself throughout my whole treatment. Having a face to face appointment with him on Thursday this week and not sure how am feeling about it. We had this love/hate relationship for the last 3 years …I even had a second opinion…it’s just been really difficult communicating with him…
Wishing you good luck with your appointment. Fingers crossed you get all your answers!! Take care. Xx
Hi @mun4o thanks for your message. Sorry to hear you had a tough time of it, hoping your appointment on Thursday (tomorrow) goes very well indeed, and you end up loving him more
I suppose the NHS would say I did have an oncologist as he/she was part of the MDT, it’s just that I never got to see or speak to them and even when I asked to, I was told it wasn’t necessary. It’s disappointing that whilst they might think that “clinically” it’s not necessary, personally for me it was, and remains, necessary. Onco is such a key part of the treatment decision making process that I want to be involved, ask questions have my views/concerns/requests heard and answered.
My breast surgeon was lovely and I had great care for the mastectomy but now I feel I’m automatically on a general pathway for Grade 2, ER+ 0 lymph nodes cancer, regardless of it being lobular type.
May sound weird but I am actually looking forward to meeting the oncologist I’ve chosen - didn’t think I’d be saying that this time last year
Hi @bee2 thank you for kind words! Likewise, good luck with meeting the oncologist you’ve chosen.
And I totally understand why you needed to see the NHS oncologist…
I am going to ask mine a lot of questions as this is going to be my ‘end of care’ appointment. I am anxious and do not know what to expect from him anymore but definitely want answers to my questions and see some kind of a plan…
Hi Countrygirl, I’ve been on Letrozole for two months and have had no problems other than the odd hot flush. I’m also on Adcal-D3 to counter Letrozole’s osteoporosis-causing tendencies and had a DEXA scan yesterday to provide a baseline for my bones. Early days and I know some after effects can pop up years later if you’re very unlucky.
Hello! Good to hear positive experience of Letrozole. I started it 3 weeks ago feeling a little nervous about the enormous lost of potential side effects and I can honestly say I don’t think I’ve had any. I don’t know it that’s because I’m just lucky or it has a cumulative effect. Anyhow, counting my blessings.
Also realise from this thread how important it is to share positive experiences too.
Best wishes.
Sorry that you have been left with so many questions . Oncology input seems to vary from place to place and depends also on your prognosis which I know is something you have questions about. I had a face to face appointment 15 mins max plus a follow up phone call 6 weeks later after which I was discharged . Others like yourself haven’t seen one . My friend who went to a different hospital even though still only grade 1 had 3 face to appointments over 14 months before being discharged - she got a lot from her experience . From my point of view my Oncologist was nice but clearly overworked - already looking weary at 10am . Some of the information she gave me about radiotherapy was not correct / up to date and although we went through the Predict model and she addressed my queries with hormone therapy I believe I could have got those things done via my BCN .
You don’t need to speak to an Oncologist to get most of those questions answered - your BCN should be able to help with a lot of those even if they have to speak to a consultant and then report back. Was your end of care meeting a Holistic Needs Assessment ? If not and you have not had one then ask for one as this offers a chance to get those questions answered . If you haven’t done the Moving Forwards course then they are often run by BCNs and there is a lot of information to access that might help you. We have a local support group where there is a BCN present and they set aside times to discuss individual queries and arrange appointments at their own clinics . After speaking to a BCN at my support group and appointment was arranged for me with the Radiologist who performed my first procedure which was unsuccessful - she helped to clear up some lingering worries that I had . I know that service and level of contact varies from place to place but your BCN service is available to you for up to 10 years if you continue on hormone therapy so it makes sense to use them.
I hope you get some answers from your Oncologist . Xx
I didn’t have chemo or radio but waited five weeks after double mastectomy for results and then started letrozole a few days after that once GP had sorted prescription.
Hi Countrygirl I have only just started Letrazole, so I have been reading your thread with interest. I am waiting to see whether I get side effects or not. You can ask for a Dexa bone density scan to check your bone density now before you start so they can monitor it. There aren’t many places you can get this though
Hi. I think I’ve come to the conclusion after reading all the posts that “fairly problem free” is possible, but that most people do have side effects - some mild and others much worse. I did have a Dexa scan and these should be available on the NHS and arranged by your oncologist. Good luck with your treatment. x
…its hard isnt it…you have tomake your decision and be content with it…i always take the view thats stats are just that and i could be higher or lower risk…then because u am not a risk taker i go with what if i am higher risk …so will always take whats offered…but we are all very different i get that… ive been on letrozole 4 years …starting to take its toll but i will keep on… .i got a recurrence after 6 years and had been on tamoxifen for 4 of those years so hoping for better odds with letrozole…wishing you well
for tomorrow, all the best,
