Hello
Thank you for your reply.
I am in the UK and the majority of people I know who have had cancer in the UK have had similar experiences to mine, ie a general lack of mental health support.
Just out of interest - has your treatment been in a private clinic , funded by a private health insurance that you have, or at a public/state hospital?
I hope you are doing well.
Best wishes from the other side of ‘the pond’.
My treatment is from marketplace insurance that I purchased online and from public hospitals and centers. Even though my deductible is high for the marketplace insurance, the rest of the insurance has been great so far with no major issues. I am doing well, thanks and hope you are doing well also.
I dont know if this program reaches the UK but worth to ask and if not, is there a similar program near you that does. https://uniteforher.org/
Hello,
A very interesting question so thought I would share my experience. Generally speaking my mental health wasn’t really prioritised during my treatment by my team. I found the higher up hospital staff eg consultants, surgeons didn’t have the time to ask me and often I wasn’t seeing the same person twice so it was hard for them to know if I was struggling. I did find the nurses more vigilant about mental health. I had chemotherapy, surgery, radiotherapy and Herceptin.
At the time of my diagnosis I was given a few leaflets etc which referred to counselling etc but that was about it. For my first chemo (which was at the tail end of Covid) one of the nurses did say if I was struggling mentally that a family member could come in and sit with me. This was lovely as I was a nervous wreck and was really struggling with the shock of diagnosis
(aged 29) and with bad memories of having previously had chemo as a teenager.
For me personally as well the time when I needed mental health support the most was at the end of my active treatment, which of course is the time when your team/support system starts to withdraw as you are supposedly “well again”. However this is when I probably would have benefited from support the most as it was only then that I had the energy/physical strength to start to process all that had happened to me.
Hope that helps!! So glad someone is asking these types of questions- Such an important aspect that is so sadly overlooked.
Thank you for taking the time to reply.
I recognise everything you are saying. I’m in the process of trying to get an idea of how best to get our voices heard on this subject. I’ll update everyone if I get anywhere…
I’m still having treatment - had chemo, some phesgo and bilateral mastectomy so far and am having radiotherapy and more Phesgo after Xmas - so I haven’t got to the point that you describe at the end of treatment but I’ve read that many people start to feel very anxious towards the end of the medical intervention as they fear being left to go it alone. It’s scary when the safety net is taken away and you’re left having to monitor yourself. I’m sure I’m going to be running to the GP with every little thing from now on! It’s another mental health side effect that by and large seems to be overlooked by the medics. I had a bit of a wobble when my consultant told me that I wouldn’t have mammograms any more because I no longer have breasts - he was very matter of fact about it but I just sat there trying not to burst into tears.
I’m not saying that the doctors and nurses are unkind or uncaring - I have found them all to be wonderful - but I am saying that overall mental health is not considered as part of the whole process. Also, sometimes their methods of communicating and the language and tone used are not the best for dealing with people who are in shock, traumatised, sleep deprived, confused and scared. I had one particular nurse on the chemo unit who was so short with me when I asked to be moved to somewhere not under a blinking fluorescent light because I get migraine that I burst into tears and sat in my chair crying. I was very close to leaving. I’d had a few bad days in the run up and was mentally low and not resilient. But had someone checked in on my mental state perhaps that nurse may have taken a different approach. That’s why they need to be asking about mental health.
I hope you are doing well and I’m sending you a hug.
My breast care nurses were amazing- could tell I was struggling although I didn’t say and suggested I go to Macmillan who offer 1 -1 counseling - I had two sessions and NADA acupuncture for HRT withdrawal - it was just good to talk to someone about how I was feeling 
Very interesting topic @jayesse
I was asked by the Breast Care Nurse attached to the breast surgeon after 7 months of treatment (surgery, chemo with Herceptin and radiotherapy, still had ongoing Herceptin) if I needed any mental health support. But said wait until next check in and at that check in she decided I was ‘much better’. I went on to have two lots of counselling with work, one in the telephone and the other face to face. The telephone wasn’t great but the face to face was more productive which happened to finished after my last Herceptin.
I have to admit for the first 6 months I was in survival mode and just wanted to get through my treatment and as has been said it hit me more after the radiotherapy finished as I stopped having regular check ins. My herceptin was transferred from the NHS to a private provider and had had multiple nurses who came and did some time talking to me but there was no offer of any official mental health support.
I have some ongoing pain issues and eventually a cancer physio diagnosed me with bilateral cording. I had a lumpectomy and sentinel node biopsy so was very low risk and nobody checked even though I complained about pain for 9 months. I had some nerve and neck issues so the physio exercises were similar but now I had some massage on top. I got upset at my consultation and she did say she could refer me for help. I was so frightened that it had taken so long to diagnose as I have good movement but ongoing pain.
As you mentioned you were having Phesgo I wondered if you wanted to join a thread for HER2+ buddies. We have treatment for more than a year and it offers ongoing support. There are people at different stages of their treatment.
I really feel that the mental health side/ post op physical rehabilitation aftercancer treatment is massively ignored .
I had my treatment through BUPA . They funded a physio for 6 months .
None of this is available on NHS , until you develop cording or lymphoedema .
Both of which I had anyway but have been helped .
I tried the free Macmillan counselling but it was with a trainee counsellor and I just didn’t feel it was helping .
BUPA agreed to fund 12 sessions , I pushed for face to face .
A great lady , who has explained about trauma . More importantly about emotional capacity. I now treat myself kindly, have strong boundaries and know my limits with regards to how much I can cope with . It’s a lot less than pre cancer 
.
Hi v interesting post
Personally, the emotional aspect of all this has been a hundred times greater than the physical…
I think (in my experience anyway) that the various professionals tend to do ‘their bit’ and point you in the next direction without addressing THE worst bit… i.e. am I going to die soon? Has this vile thing spread? Am I going out of my fucking mind?
I was offered a phone number… a nurse…
I really don’t know what the answer is…
The physical recovery from surgery is (usually) not that bad… the emotional recovery is ongoing and relentless and endless….
Hello, Thank you for your post, I thought I was on my own. I had Kaiser and transferred to City of Hope with hopes to receive top notch treatment. I was never asked about my mental health, I was asked how I was doing but never how I was feeling mentally. I have triple negative breast cancer, I didn’t want to go to my last treatment I was so emotional and didn’t want to go through chemo any longer. I didn’t want to share my agony with my family as they were already scared to lose their mother. Answer is no I was never asked about my mental health. Thank you for posting. I wish everyone the best and stay strong you will get through it.
It has been really interesting reading everyone’s replies to my original post. It seems that the lucky few who have received mental health support are very much in the minority. I am definitely going to be researching this issue further and trying to do something about it in the new year.
I will keep you all posted with anything I find out.
X
I have secondary breast cancer and am suffering from what my GP has diagnosed as anxiety. I have found my GP to be more helpful than my oncology team. Although I found the usual anxiety medication made me feel really sick I have been referred to talking and have also had a counselling session with a local cancer help charity which has helped. I have found the relief of having an anxiety diagnosis has actually calmed me down a lot (because no-one wanted to give me a reason for my lightheaded ness and panic attacks). I am very slowly getting better at controlling my anxiety (Delta Wave music really helps). I would suggest you discuss everything with your GP as they have more knowledge as to what help might be available).
I’ve found this thread very interesting.
I was a nurse - I thought I was resilient until my diagnosis last January. When after weeks of investigations and treatment discussions I had surgery and my wounds broke down - I broke with them. The staff I had contact with seemed unable to ‘see me’. I knew too much and nothing was going well. Psychology referrals were offered but with a veiled surprise that they thought I should be coping better-?! - and the referral time was long as the service was over whelmed.
Hearing that I am not alone in how I’ve felt historically and on occasion even now, is very reassuring. I sincerely hope Ive never left any of my patients feeling as I have over the last 40 years of care delivery.
Hello
I felt very sad when I read your post and angry that you didn’t receive the care and compassion you needed. What you say about feeling that you weren’t seen/heard is very common and what I simply can’t understand is that the medical teams seem to be in denial about the connection between mental wellbeing and resilience/recovery from treatment.
I am going to try and raise awareness of this and have started to reach out to organisations I think might point me towards the right people to contact.
I hope you are doing well at the moment.
Sending you a big hug x
Hello / I have finished all my cancer treatment in august this year and have really struggled with my mental health since. I have really bad anxiety and depression at the moment. Struggling to get help with GP as they just keep saying the antidepressants will take time. I am on mirtazapine 30mg and propronal 40 mg upto 3 times a day. They say my body and mind still thinks it’s on fight or flight mode. At wits end and not sure what to do. Anybody eke suffering like this. Thanks for listening.
I’m so sorry to hear that.
Have you thought about phoning the Macmillan helpline and speaking to someone there about what you’re going through? They might be able to suggest other ways of getting help too.
Yes anti anxiety meds do take a while to kick in but it sounds to me like you need more than just meds alone ie some counselling or CBT or relaxation therapy.
I think it’s very common to get very low after treatment finished because you’re suddenly left to fend for yourself again and that’s scary after going through treatment.
I really hope you can get the right help soon.
Sending you a big hug x
@pussycat26 Im so sorry to hear you are struggling with your mental health after finishing treatment , you are certainly not unusual in finding things hard at that point .When all calms down it’s like your body and mind suddenly start to process what has happened and go into shock .
Some NHS breast care teams have psychologists attached to them which you can access for some input , it might be worth contacting your team directly and asking if they can provide that service , they may also be able to point you in the direction of local cancer charities who provide free input also .I hope you feel better soon . Best wishes Jill
I’m so sorry to hear how you’re feeling. I too finished my active treatment in Aug and have been trying hard to get back to a good mind set since. Counselling is helping a little ( I reached out to my insurance company who were super helpful and provided me details of someone I can see for face to face sessions within 48 hours) and I am in touch with my GP who is monitoring my anxiety and mental health.
Wishing you all the best xx
Thank you I am seeing a psychologist too at the moment.
Thank you. I am seeing a psychologist through maggies
I was diagnosed in Jan 2024, I have not been asked even once how I am doing mentally or emotionally this year. It has been a tough year and I have had ups and downs. I have just dealt with it I think it would be nice and beneficial if a medical provider looked at me and asked me how I was doing and how they might help. All in all I am doing well thanks to my support at home