Firstly I apologise for putting another negative post, as I know how helpful and reassuring positive posts can be but I am so upset and need to tell someone!! My Mum got her latest CT results yesterday not from her consultant ( who was there because we saw her nextdoor) but from a 'speciality registrar' ( trainee doctor! ). She said it had progressed, some tumours in peritoneum have doubled and now include various lymph nodes, still no other organs! She then said " well what do you want to do?" I told her that after the last scan in Sept the consultant mentioned trying Anastrozole as she had seen good results? " no" she said " I dont think it will do anything only shown to work in about 8%!" ( I read cancer research results when got home and it worked in 44%!!) . So then I said try a different chemo then? ( told platinum resistant because started growing in 5 months) " no " she said " your mum is not fit enough ( mainly not able to move about enough because of osteoarthritis ) for any other type side effects and toxicity could be too much and the end result could be worse than she feels now". Surely if we don't try she is going to feel very ill very soon anyway??! So she is only being offered carbo again! I asked if it would do much? "probably not but we can try if you want , how did you cope with it last time?" Very well we said! I then said I had read about research and people taking metaformin for this type could we try that? she pulled a face and said she hadn;t heard of any results on that and might be a new trail ( 2014-2016 I read on medical report) she then went on to say " you wouldnt get on a trail because they usually only take people that are otherwise fit and healthy!" my god could she be anymore depressing, negative and unhelpful!!! After she wiped her nose on her mask for the 50th time!! Because of the great support and advice on here, I said we would like a second opinion from Dr Barton at Royal Marsden? she laughs and said " yes you can and that is who we would have referred you anyway but I don.t think he will tell you any different and still unlikely to do surgery because they don;t remove those lymph nodes anyway!" I said we would pay for the consultation to speed it up. She agreed to do it anyway!
Well after that meeting I feel total dispare and have lost all hope of getting on top of it again! Surely you cant be written off like that!! I felt as if we had gone there for results of a sprained ankle and nothing more serious! definitely not life or death!! I am stunned at my mum;s treatment and just because she has other health issues shes not worth bothering with!! If we hadn;t agreed to try carbo again it would have been go home let us know when you start to feel ill! then do what??!
I am hoping she is wrong and Dr Barton is going to help us!!
Sorry for the long rant! any thoughts would be appreciated! Thankyou for reading!x
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Cobweb2
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It is absolutely disgusting how you and your Mum were treated at your consultation.If it had been me I think I would have just walked out and insisted on speaking to my consultant.
I would ignore what she said and get some second opinions arranged as soon as you can.
There are many more treatments available.
I think some doctors just write you off if your a bit older or your stage 4,it’s totally wrong in my opinion.Don’t give up hope,be determined and proof her wrong!
I'm not surprised you feel so angry. You're in a safe place here, and can rant without worry.
I would certainly follow up with a letter to your consultant, cc the junior doctor, confirming that in light of a very unsatisfactory appointment and conflicting explanations, you will require an urgent referral for the second opinion as discussed.
I would also ask for a private call with your consultant and feedback on the junior's 'bedside manner'.
In the event of any kickback from either of those two actions, I would then escalate to the Patient complaints service - here in Gloucestershire, it's called PALS, but it might be different with you.
Use your anger in a controlled way to get the action you and your Mum need. It may not change the outcome treatment-wise, but you will at least have certainty that you have explored every single avenue for her.
Your mum is lucky to have you. Take care and keep us posted
So sorry to read your post you must have been so shocked at such hurtful unhelpfulness. Some good relpies on here and do think PALS will help. How would that dr felt if it was their mum. Sending a hug to you and your mum. X
Well. No one should have to Subject themselves to this kind of interview and I'm truly sorry you had to go through it with your mother. Some Interns are ok but they are not the last word. They are at the start of the learning curve and Oncology is a long game and the amount of knowledge they have to absorb and analyze is huge. Nodes are operable and also do well when radiated for example. Anastrazole depends on the patient's estrogen sensitivity. There are not a few women on this site who have had it. Second opinions are valuable and u wish you good luck hugs from paris
It is a repurposed drug for cancer.Available on prescription from a doctor.It is one of the meds the care oncology clinic provides.It is used by diabetics usually to help keep glucose levels down,but has been put through promising studies for cancer,as it is thought cancer cells love glucose to grow and metastasise,so by taking Metformin you are trying not to give them so much glucose to feed off.It is best used in combination with other things not just on it’s on,I take 500mg twice a day,although you do need to work up gradually to this dose.
I also use gluchopage it is the same because i am overweigh and have metabolic syndrom, just i think probably my mom who have ovarian cancer she use it because her glucose was up and it help it get down, but than she finished to use it maybe it help her to be in remission for 4 years? Now it is reccurance probably, maybe she need to start to drink again i drink1 tablet for thing 1000mg
Hi, I'm really sorry you had such an awful consultation with your Mum. I think you should definitely talk to your consultant about it and insist you don't have a consultation with that particular Doctor again. Also get 2nd opinions urgently. Good advice above from the girls. All the best Sue xx
I add, you can get a listening ear and guidance from Ovacome's Support helpline and I 'second' what many say, go for a second opinion. I took my recurrence in 2013 with tumours in the 'remant lymphatic system' left behind from hysterectomy and lymphadenecomy for the first occurrence, to Professor Christina Fotopoulou at Queens Charlotte, London. My oncologist at Addenbrookes, Cambridge had stated surgery again was too dangerous but Prof Christina and her team removed all the tumours and I am still here 8 years later with no recurrences. She is well known to Ovacome and many of us here. Good luck and don't give up...as am sure you won't! Warmest wishes, L
Gosh, I'm so sorry you have had this experience! I would repeat what the ladies have already said and get a second opinion. As already mentioned, Professor Christina Fotopoulou at Queens Charlotte, London is certainly someone you should speak to. I am a patient at Queen Charlotte's and when I was in hospital I was with several of her patients from around the country who had all been told there was nothing that could be done by their own consultants. My very best wishes to you and your mum! I hope you get some encouraging news on a new treatment plan. Never give up. xx
That is really horrible. That Registrar is training for the wrong profession!!! I am so upset on your mum’s behalf. I hope you have a positive experience with your second opinion!
Thank you for your post. I’m really sorry to hear that you and your mum have had this challenging experience. I can see you’ve had lots of supportive responses from our forum community and just wanted to share links to some suggestions from forum members, which I hope may be helpful for you and your mum:
I also wanted to let you know about our Friends and Family support group. The group meet once a month via Zoom, offering a safe space to connect with others who are supporting a loved one with an ovarian cancer diagnosis, ask questions and share experiences. For more details, and to sign up to our next session, please visit: ovacome.org.uk/event/family... . You would be very welcome to join us.
Please don’t hesitate to get in touch if you would like to talk things through. You can call our support line on 0800 008 7054, email us via support@ovacome.org.uk or send us a message directly through this forum. We’re here Monday – Friday, 10am – 5pm, to discuss questions or just to have a friendly chat.
God bless you for having a rant for your Mum you want her too live we all do. Please get a second opinion its just not good enough god help them if it was them. You keep fighting for your Mum she needs you and your doing the right thing your an angel..lve had a rant myself tonightNearly the same thing we just need help were human beings. To my MP lve told her its nice to be classed as NED but we need checking regularly and that doesn't happen and it should, so you rant it could save your dear mums life. Lots of love & hugs and dont apologise for caring she needs you. Xxx SheilaFxxx
Rant away young lady the way you and your mum were treated is unacceptable in any situation. So very sorry and I would follow up on all the suggestions and with a second opinion and if that isn't enough a third what ever it takes. No one will advocate more for your mum than you or her! Bless you for being there for her as this is so devastating and not having a great support oncologist is despicable. Good luck and please let us know how you and your mum are fairing.Debbie
So sorry you had such a terrible experience with that intern. I would definitely report that experience to the patient liason at your hospital and to the attending physician.
We here in USA have no problem reporting poor care and inappropriate physicians care delivery.
Get yourself a new doc. Someone who cares and will listen to your concerns.
There is NEVER a time that compassion , caring, or exploring alternatives can be excluded.
I am a retired clinical nurse specialist from critical care and have had nurses and doctors leave their practices because of shoddy care.
You deserve and should demand better treatment.
Stay strong,demand the best,.
I'm routing for you. Praying for mom and family.
Do not get discouraged. I dont know what the care is like in the UK but I feel like there is someone out there who's just waiting to help you! Keep us posted.......
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A daughter lost without her beautiful mam.
Very Saddened
My daughter's ca125 is 21
