i wonder if anyone could give me some advice please?
I was dx in 2004, bit of a rocky road since then that I’m sure most of you are familiar with. Thing is, I am losing confidence with my current team (they changed since originally dx as consultant retired and BCN left). I never seem to have the time to talk to them about anything, they want you in and out as fast as possible and I feel as though they don’t really know me (different doctor everytime).
to cut a long story short, I would like to go to the Mardsen (not too far away) and have a good chat with someone about things, and also about genetics, as I have a 15 yr old daughter.
Am i able to do this, and if so, how do I go about it? Has anyone else done the same? I just feel very nervous about my current management,it’s “wobbling” me and I would just like to see the absoloute experts for an “overhaul”!
If you would like to give the helpline team here a ring they’ll be able to help you with this one. I’m sure other forum users will be along shortly with their support too.
Hello, I’ve recently had a second opinion at the Marsden and can explain the process to you.
Firstly, seeking a second opinion is very common and should not compromise your current treatment. I have a good relationship with my oncologist but, as I have secondaries, wanted to explore further options. I contacted my GP and he wrote a letter of referral to the oncology department at the Marsden. You can find the contact details on their website. The Marsden then wrote to my oncologist requesting details of my diagnosis and treatment to date. As soon as they received the information, an appointment letter was sent out and I saw a consultant within the month.
So, make an appointment with your GP and if the Marsden accept you, they aim to see you within a month of receiving your patient information.
Hi Jo and Tawny,
Thank you everso much for your replies and really helpful info. I have already made an appt with my GP for 2 weeks time, but thought it would be helpful to have some info for this.
Can I ask, do you think I would still be able to see them if I am not currently on any treatment at the moment? i finished Arimidex 4 months ago after 5 years.( i didn’t want to, I wasn’t able to see the oncologist to talk about it , apparewntly because i “didn’t need to” - instead the BCN emailed the onc to confirm i can stop it) and now not on anything.
i am scared not to have anything, and would just like the opportunity to talk about everything instaed of being dismissed as a nuisance (like I am now). Do they only see patients who requier treatment, or would they be OK about seeing someone like me?
Thank you for your advice XXX
I think this would depend upon The Marsden’s policy, which I don’t know. I phoned them before speaking to my GP (again using the website information) and the person on the phone was extremely helpful. Why not give them a call first and see if they can enlighten you?
Hi Happyshopper. I also have just last month finished 5 years arimidex,but in my case I am happy to be off of it.Re your question about oncs. My experience was. I saw onc when first diagnosed only.After about 4 years had significant bone loss,oesteoporosis so my GP requested an appointment with onc to discuss coming off/staying on it.I had that appointment,but must say although he was pleasant I got the distinct feeling that this really wasn’t something to take up the onc’s time.He said,very nicely though, that’your GP is panicking’
In many ways I think I agree with that,there were some obviously very poorly people waiting also to see him and I did feel a bit uncomfortable being there since as far as I know,as we speak, I’m NED.Believe me I know the feeling of 'would love to have peace of mind that nothings there’but not sure we can ever truly get past that. I wish you well
Hi I have changed hos to the Marsden and I’m so glad I did I just went to my gp and told him I’d like to change he done the referral for me you can also ring the pals team for advice we did I’ve not looked back the are so nice up there gd luck Laura
Happy shopper I can help with the genetic side of things. If you were over 40 at diagnosis and nobody else in your family has had breast or ovarian cancer then your daughter would not be at an increased risk of developing breast cancer. This would be on your mum and dads side of the family. Now obviously without an increased risk this would still give a 1 in 8 chance of developing the disease in her lifetime the same as the rest of the population.
If you were under 40 at diagnosis or you have more affected family members particularly if under age 60 then she would be at an increased risk and could be screened from around 35-40 annually until she is 50 then it would be 3 yearly.
If you have 4 affected family member under age 60 in 3 generations or if obe individual had bothd breasr and ov ca then she would have a significantly increases risk. If this were the case you would normally be offered genetic testing if you wanted. If you were found to carry one of the gene changes then your daughter could choose to be tested when she is 18.
If you think you fit the criteria for extra screening or testing in your family your GP can request a referral to genetics to discuss it and assess your family.
In regard to the marsden I suspect they would bd in agreement with your current oncologist as that is the standard length of treatment. Although some places will let you take it for a little while longer if you are anxious about stopping but the effect of the drug do not stop working as soon as you stop it. It’s been found if you take AIs or tamox for 5 years then it reduces your lifetime risk of recurrence.
I think the advice to give the marsden a call is a good idea they will be best placed to advise you. And remember even though your finished your meds if you notice any changes or have any concerns go snd see your doc.
Hi Ladies,
Thank yuo so much for your kind and helpful replies.
I do feel “guilty” for wanting to see them, when I am currently (hopefully) NED, and they should rightfully be there for those more needy than me.
Unfortunately I have not felt "safe2 with my breast team for a long while, and last saw an Onc in 2006. I am probably a little “wobbly” at the moment because I was recently sent for CT scans to exclude secondaries, and that has really taken me back to the awful time of first dx in 2004. Thankfully these are clear (but then again, I question whether they actually are, as at time of initial dx was told all Ok, and it actually wasn’t! i was further wobbled by the Reg in breast clinic (during check up) asking if I was still having mammograms on the "good "side - she had examined me about 30 seconds earlier - and I have had bilateral mx!
i have always felt that I want to be looked after by a team I can feel confident with, and all I have read about the Marsden, seems to fit the bill. I think the recent brush with a possible dx of secondaries has made me feel the need to be with a good team if the worst was to happen - and I don’t feel that now.
Thanks Lulu for the advice about genetics - I was 39 at diagnosis, and my mum died of ovarian cancer aged 70, and my aunt (mum’s sister) died of breast cancer. I would be grateful for your advice with this.
if you have had a bilateral mastectomy i dont think there is much else another team would do either… we would only see patient for 5 years from diagnosis for clinical exam only… no mammos or other scans unless there was a concern… i think this is fairly standard and if you were diagnosed in 2004 you would probably have been discharged from most clinic 1 or 2 years ago… however if you dont have faith in the team caring for you its very hard to get that bit of closure.
and with regards to your CT although there is nothing there which is great news we all know that is just a snapshot in time and only tells you what is there today and not what might be there in 5 years time… but we are all in the same situation only those with confirmed secondaries have any regular scans of the areas where the secondaries are.
the only other time you would normally get scans was if you had any symptoms.
now in relation to your family history you do not fit the criteria for testing based on family history alone but using the Evans (Manchester) score which is a points based system you would have at least 20 points which is the minimum needed to be tested… not sure what age auntie was at diagnosis but you get 8 points for being diagnosed with BC at 39, mum gets 10 points for getting ov ca over 60 and auntie would get at least 2 points if she was over 60.
now there is also a research programme called the genetics of familial breast cancer, we call it BRCA 3 as its aim is to identify a new gene and in order to do this they need to rule out anybody with BRCA1 or 2 as that would interfere with the research so they do the testing by default… in years gone by the techniques were not as good as the diagnostic labs however for the last 3 years they have improved and are just as good as the labs but it can take a longer to get results… through the labs it can take around 4-6 months through the research it takes around 6-12 months.
if you were found to be a gene carrier then they would suggest bilateral mastectomy so the fact you have already done this is one less thing you would need to decide on… they do also offer oophorectomy and this might be something you would want to consider even if no gene change is found.
Hi Lulu,
Many thanks for your reply and for putting things into perspective for me. I think that I have had a “right old wobble” really.
May I ask,do you work in breast care? your answers are clear and honest, thank you X
hi happy shopper… im a breast care nurse in screening and genetics, currently getting treatment for BC for the 3rd time and carry a brca 2 mutation… and im also dead nosey so if i dont know something i have to go and find out LOL
glad i have been able to help… and dont be hard on yourself it can be really scary coming to the end of treatment and everybody is entitled to a wobble every now and then.
Thank you so much for your lovely post, and I really wish you were my breast care nurse! Your patients are very fortunate to have you and I really admire you for working somewhere that is so close to home - you must have (or I hope you have) good, supportive colleagues around you.
I am also a nurse but unfortunately was treated awfully when I returned after my treatment - so badly in fact, it has utterly traumatised me and changed me from a confident, sensible, person into a neurotic mess.
Anyway, enough of that. Once again, thank you Lulu XX
awww happyshopper im so sorry you have had such unsupportive colleagues… mine have been fantastic, if anything a little over protective… hope you can find somewhere better with some supportive staff where you can gain that confidence that you once had.
i run a website for student nurses… if you google student nurse its the first site… we have qualified nurses as well, but its a very supportive community much like this.