Hello
I would be very interested to hear from anyone who would like to give some feedback on how their treatment team/hospital have approached the issue of mental health during their treatment.
In particular I would like to know:
Have you been asked during your treatment how you are doing emotionally/mentally?
If you have been able to say you are struggling mentally, have you been pointed in the right direction to get help?
Have you missed any appointments due to mental health issues during treatment?
Has your mental health caused you to consider giving up treatment altogether?
Do you feel that your treatment team acknowledge the importance of mental health in your recovery?
Did the mental health issues exist before diagnosis and treatment or are they a result of diagnosis and treatment?
I am interested to know because my experience (and that of a friend with bowel cancer) is that there is no acknowledgement of mental healthās part in a patientās resilience to treatment and ability to recover and that we are never asked how we are doing from a mental health perspective despite all the research and evidence that shows how important mental health is for recovery from any major illness (not just cancer).
Yesterday I raised it with my oncologist and she admitted that the medical team should be acknowledging its importance in a far wider context but she went on to say that it is down to patients to say they are struggling and not up to the team to ask. I disagree with that on the basis that some people may not want to say they are struggling mentally and might need to be asked subtly to be able to admit it, others may think itās a āweaknessā to struggle mentally so may not say anything unless directly asked, whilst others may not recognise what they are experiencing is a mental health issue
I am not expecting oncologists and surgeons etc to become mental health practitioners but I feel that they need to know how their patients are doing mentally as it has a direct bearing on a personās recovery. I also feel that they should be asking so they can refer people to the correct mental health help, in the same way as they do with the physical side effects of treatment.
Iām interested to know what other people think and whether they think itās something that we need to raise more awareness of.
Iād be grateful for any constructive feedback from you.
Thank you
I would be interested to know this. Iām at the diagnosis stage and found this traumatic, it has been horrendous and thought I was losing my mind at times. Iām going to ask at my appointment tomorrow about mental health support.
Hello
Thank you for replying to my post.
I completely understand how traumatic it can be. Iām very glad you are going to ask about mental health support. At my hospital all they do (and only if you bring up the fact that you are struggling mentally) is tell you about their counselling service. This has a very long waiting list unfortunately and my experience is that mental health issues cannot usually wait 12 weeks!
I am lucky in that I can afford to see a private counsellor every 3 weeks but others are not. Plus I am very mental health aware and have a very good support network I can rely on. So Iām lucky but it doesnāt change the fact that I feel mental health is largely ignored within cancer treatment as a whole. So Iād be interested to know what your team say tomorrow!
Do you know yet what treatment you will be having?
I have used this forum to ask my question re mental health. However I donāt use it for info about any other aspects as I found when I did (just after diagnosis) that it scared the poo out of me because most of the posts are about negative experiences. People who have good experiences donāt tend to post as they donāt need the support of others and people who are over treatment and doing ok are too busy getting on with life. This means the majority of posts are people reaching out for support because they are having a hard time, so itās a bit one sided and not a true reflection of how it can be. I found it all very frightening and decided not to keep reading and just see how things went for me and it hasnāt been as awful as some of the posts I read made me think it would be. Chemo was a bit of a struggle but not horrendous and surgery and recovery from surgery have been really easy for me and I love my new chest with the two smiley face scars. I now have to have radiotherapy and targeted therapy after Xmas so Iāve got a way to go yet. Iām taking things one day at a time at the moment. Of course Iāve had bad days but Iāve had more good than bad overall.
I hope your appointment tomorrow will give you some clarity and reassurance. I found that once I was told āthis is what we are dealing withā, āthis is what we will doā and āthis is when it will startā I felt much better about it. I hope this is the same for you.
Lastly, if you are worried about any aspect you can call Macmillan. They are wonderful and wonāt fill your head with horror stories!
Wishing you all the very best and sending you a big hug.
Iād be very willing to give you feedback on this
I feel exactly the same
I was diagnosed in Feb and March last year after finding the lumps myself.
The impact of waiting for appointments is bad enough without having to undergo biopsies, mri scans and bi lateral lumpectomies and follow up surgery. The physical side is one thing but the ongoing mental impact.
I had cancelled appointments at the last minute and rescheduled surgery due to drs strikes
I was lucky enough to be selected for a trial from a London hospital and began one to one sessions with a counsellor who really helped me deal with all the mess that my head was in!
I spoke to my breast care nurse and I think word got back to a psychologist who is attached to my oncologist dept. With help from those two ladies I felt over the weeks and months that there was some light at the end of the tunnel.
I also joined the someone like me program where youāre assigned a ābuddyā to regularly chat with you for an hour every couple of weeks or so as theyāve been there done it !!
The other group was moving forwards after breast cancer
The moving forward after breast cancer is great too and I joined the online forum as my anxiety took a turn for the worst during all this time. I began a WhatsApp group with some of the ladies from that group and a few months down the line thereās three of us who talk regularly about anything and everything.
Once you have got your head around the diagnosis and treatment and emerged from the blackness that can make life a tad difficult you start to take steps towards a new normal. It takes time but every day is a new one and you are not alone! This forum is amazing and thereās soo much good advice from patients and medical staff.
There are days when things seem very dark indeed but what I would say is do your research and join every group that is offered to you. You can always remove yourself if itās not the best fit.
I am currently a member of a monthly forum where we have been discussing just this very issue about the impact of cancer and surgery having on your mental health and so many issues have been raised. There are psychologists on the panel and they are feeding all this information back and we are discussing a newsletter whereby a different topic is discussed each month. Also having contact details for patients especially for those who donāt have access to smart phones etc
I agree wholeheartedly with you that there just isnāt enough information out there for everyone as in who to turn to when your outlook is so bleak.
One thing that kept me going was someone told me āremember, thereās always a blue sky behind the dark cloudsā
If you want any further info or any links to the groups Iāve mentioned please let me know.
We are all in this together and should support each other as much as we can
I read your post with interest, as I had just said to my husband that I found chemotherapy mentally as well as physically hard. I donāt recall ever being asked how I was coping mentally, the emphasis was always on my physical health. There have been occasions when I wanted to stop treatment. I ended up at A&E so many times after ringing the emergency number when I had a raised temperature. I found that to be mental torture, and I became almost scared to take my temperature, as I then had a decision to make. I didnāt feel in control of anything.
I was diagnosed in April. Had surgery in May and was supposed to have radiotherapy and injections for a year. My treatment plan changed and I had to have chemotherapy. I never wept once. But I have cried so much during chemotherapy. My daughter in law has mental health problems and when she saw what I was enduring she suggested counselling. It was something I have never had before throughout my life and I am 61 years old, but I did do something about it, and took up the free sessions with BUPA via Macmillan. It is so nice to speak with someone who is not a relation, gives really sensible advice and help and is very easy to talk to.
I have finished chemotherapy now and move onto radiotherapy in the new year. I have lots of things planned for next year as well.
Reading your post, I feel fortunate. When I was first diagnosed, my oncologist offered me the option to see a psychologist at the hospital and even helped me schedule the appointment. When chemo started, I had to fill out a form to assess my mental well-being. I continued seeing the psychologist for a year, as it was covered by my insurance. While Iām still stressed and worried about the possibility of a recurrence, I feel that the tools I gained from therapy have really helped me cope. I also know that I can reach out to a psychologist again if I need support in the future.
Thank you all for replying to me. It seems that overall the general consensus is that not enough attention is given to patientsā mental health. Seems crazy to me that they donāt take a more holistic approach to treatment as itās so well documented that mental health affects physical recovery.
Iāll be having radiotherapy after Christmas and targeted therapy. Just got to go with it but I really intend to work on raising the issue of how mental health affects physical recovery/attendance etc.
Sending you all a big hug.
Hi @jayesse this is an interesting question. In my case I was diagnosed during Covid and was never asked about my mental health at any point, even though I would have been living and coping on my own with my treatment and diagnosis. I found it really hard at one point as was coping with treatment as well as other personal things going on in my life at the time and reached a point where it was really overwhelming. I managed to get myself back on track, mainly through the support of Breast Cancer Now and the services they provided which I was directed to by one of the lovely nurses in my clinic team, for which I am very grateful. I would be interested to see otherās views.
Thank you for your reply. It seems that the majority of people get no mental health support and are not asked how they are doing mentally. I think this needs to change.
I hope you are doing well now.
Xx
I am at St James hospital and have found the breast nurses, oncologists, radiologists and infact all teams verysupportive around mental health. They constantly remind me of the support available as they are aware i have health anxiety. They suggested i saw the psychologist at Maggies for which i have weekly /two weekly sessions with. I did have health anxiety before my diagnosis first and second time due to previous family health issues. They know that good mental health assists recovery.
Hi itās lobular cancer, itās her 2 negative and has hormone receptors so Iāll need a mastectomy and radiotherapy. Consultant was positive and Iām booked in for op on 24 jan 25. Ct scan before then. Thanks for asking after me, hope youāre ok
Iām so pleased to hear that you got good mental health support. Sadly it seems that the majority of patients donāt.
I hope you are doing well with the treatment xx
I hope you are feeling okay after your diagnosis.
I was really scared about the operation as Iād not had a general anaesthetic before and I didnāt like the idea of going home with drains but in reality it was an absolute doddle and Iāve healed well and feel good and I am really pleased with how it looks. I hope it all goes well for you. Xx
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