Overwhelming guilt

[e335173]

I recently got diagnosed in June and am now struggling with a range of feelings. I am 29 years old, diagnosed with stage 1, grade 3, ER/PR positive, HER2 negative BC. I’ve had surgery, which went well, and am due to have radiotherapy and hormone therapy. I was offered genetic testing due to my age which luckily came back negative. I haven’t needed chemotherapy, and have also had the amazing oppertunity to complete 3 back to back round of IVF preservation before starting hormone therapy which will push me into menopause.

I know how lucky I am that things have gone relatively smoothly and my specific cancer is treatable but I feel so guilty when I compare my experience to others. I am a paediatric oncology nurse, so I see children going through incredibly intense treatment and suffering everyday. It makes me feel guilty for finding my own diagnosis sometimes difficult when I know things could be far worse.

I almost feel like I haven’t been through enough to be a real part of the breast cancer community. I have gone to an exercise class run by a charity to meet other women and feel guilty that I haven’t gone through the same things they have. Has anyone else experienced this type of intense guilt particularly if you haven’t received chemotherapy or have had a relatively good diagnosis and treatment so far. I’d really appreciate hearing how you’ve dealt with these feelings

[jo-lean]

Your experiences are just as valid as everyone else’s. All of us have had different diagnoses and treatments with varying outcomes. I understand where you are coming from as although mine ended up with a mastectomy, the operation got it all out and I have 3 weeks until my final chemo which is just to mop up anything hiding. So if anyone asks if I have cancer, I really want to say “No”! I have read on here and on other forums women who have had it far worse, however, I wouldn’t wish my comparatively “easy ride” on anyone. None of us want to be in this club, but we are and although it might not feel like it at the moment, at some point, someone who is about to go through something similar to you will be grateful to hear of your experiences and how you coped. It is fantastic that you got sorted out at an early stage and so far, everything looks good. For me, your experience is harder than mine. I am twice your age and you are so young. I hate to read when young women in the prime of life are having to go through something like this. IVF is also not easy and you still have that all to deal with yet when treatment is done. As far as I know I am not getting any radiotherapy, but from what little I have seen on videos, that too is not easy. You are not getting it as easy as you currently think. It must be hard too with your job trying to negotiate your way through helping the little ones. You still have treatment to get through which will not be a breeze. You are one of us and there is no need to feel guilty. Look after yourself and I hope that all goes well.

[JoanneN]

Yes it’s quite common for those us who have had a more straightforward time of it to feel guilty - it’s a form of survivors guilt really and as you have a background in Paediatric Oncology and you know exactly how bad things CAN be then it’s not surprising that you are feeling this way. I’m also a Nurse ( adult ) and I had similar feelings . The day after I got my surgery results to say that my margins and nodes were clear one of my colleagues died of prostate cancer - such a nice funny man with a wonderful family who were all heartbroken as were we all . Part of me wondered why I had it so easy and why did I deserve to be the one to survive . It’s a sort of imposter syndrome as well - there are whole threads about this on here.

I sometimes feel like an imposter at my support group because most of the ladies have problems that I haven’t had to deal with . I’m lucky - I know that and I frequently said it but it took me a long time to believe it as I had a lot of anger that I had to let go of . They have accepted me as one of their own nonetheless .

At the end of the day you deserve a chance to process and to feel how you feel . This thing has turned your life upside down , you have had to undergo IVF , your life has not unfolded as you thought it would and it will have changed the course of it to some degree as well as how you feel about many things . The feelings you are experiencing will pass with time - you could look into doing Moving Forwards course and / or Holistic Needs Assessment which many of us have benefitted from .

Sending very best wishes to you xx

[southwest123]

I was heading towards the feelings of guilt because I had a comparatively very easy time of things. I said one day to my boss that I didn’t think I deserved or needed all the fuss because I’d got away with it lightly and she said: “it’s not a competition, and if it was it’s one you don’t want to win”. Put things in perspective for me and now I’m simply grateful that I came through the other end relatively unscathed.

In terms of not feeling part of the breast cancer community, this is something I have reflected on a lot. Rightly or wrongly, I came to the conclusion that it is just as important to be part of the community when things have gone well and share those experiences as they may help others. I know how much I appreciated hearing those more positive stories when I was diagnosed. x

[e335173]

Thank you so much for your lovely message! Really thankful I found this forum! I hope your final round goes well!

[Jaygo]

First of all well done on getting through this ride. It is not easy no matter how ‘easy’ or challenging the journey is. The emotions you experience are exactly the same. I have had an ‘easy’ ride as well as a more serious one.

Survivors guilt has been a big one for me. Whenever I see my friend who lost her husband to cancer I just feel terribly guilty that I am still here.

I can’t imagine how hard it is to work with children with cancer. My biggest dread was seeing a child in the cancer ward and thankfully I didn’t. It would have broken me. Just think of how your experience with cancer will enhance the empathy and care you will be able to offer them. If you are permitted to divulge your own story, then they may feel more able to be brave knowing you’ve been there too.

Never underestimate what you’ve gone through. I hope the responses on here will help you feel more able to let go of the guilt and instead give yourself a huge amount of praise for your courage. x

[ceirib]

I’m having a similar emotional reaction. I was diagnosed following a routine mammogram a few months ago.

It was all very sudden; I never got a letter inviting me to Breast Clinic; I got a courtesy call Monday afternoon checking I was coming to Clinic the next day and I was like ‘what clinic?”. I had a small Stage 1 non specific hormone sensitive successfully removed with surgery in June. I live alone at least 2 hours from nearest family and an hour from friends, and am also a nurse (with cancer care experience) who now works from home. I couldn’t cope with the concentration I needed for my job (mix of service user calls and data analysis). I went to stay at with family while waiting for surgery and after surgery as I have a history of severe bouts of depression if I can’t maintain work routine. During this time I’ve also had a gynae cancer scare (thankfully negative) and pre-op bloods also identified that I may have Stage 3a kidney disease so am now having to see a specialist for that. I had to call out my GP on this because apparently this jad been showing up in some repeat blood tests I have been having since last October for something else but GP never referred me when they should have as I’m a type 2 diabetic. I’ve also had to travel between 3 different hospitals up to an hours drive away for all this.

I was off work for 10 weeks in all and I went back to work 2 weeks ago on a phased return. My boss and team have been fantasticly supportive and my workload is adjusted so that I can work to my own pace and flex my reduced hours so I can take breaks as needed. I’ve been quite surprised how mentally challenging it’s been to get back in the grove. I’m waiting to have 5 sessions of radiotherapy in October and have to have gynae surgery to treat the benign issue they found.

I’ve found a really nice and welcoming local support group and have connected really well with one woman in particular whom I’m becoming friends with outside the group.

However last Monday I just couldn’t get out of bed. I just didn’t want to speak to or see anyone or engage with anything and rang in sick. I keep crying. I’ve always been a cryer (sad TV shows and films) but it’s gone way behind that!. I found myself constantly telling the people who I did tell about my cancer “I’ll be ok, I’ve been really lucky. If you’re going to get breast cancer I got the best type you can get.”

You put into words kind of what I feel. I don’t feel I really had cancer. It was a small lump removed easily with surgery. I was driving 2 days and able to do all normal everyday activities post op. I’ve had no complications. And I feel an immense amount of shame for needing time off work as I wasn’t physically ill from it. I actually had quite a nice summer in a way, pending time with my sister and her boys in their house, chilling in the back garden and playing “housekeeper” while my sister worked. My friends were incredibly supportive, checking in constantly and offering to drive to see me, take me out etc., although I didn’t feel up to socialising much. My sister is supportive practically in happy to have me in her spare room, but isn’t the type to ask me how I’m doing/feeling…never had been. Will listen if I bring it up but never asks, and now I’m officially “cancer free” it’s I know it’s in the past for her.

And now I feel so shit that I’m not keeping up with my return to work. I feel like such a fraud. My boss again is being fantastic and, being a nurse themself, is reassuring me that my emotional difficulties are to be expected. And while that’s nice to hear this voice in my head is still saying “you had it easy, you took advantage of the cancer to avoid work and just lie in bed all day”.

I’ve managed to get up and function yesterday and today and plan to go back to work on Monday but my emotions are all over the place. This is the first time I’ve actually said it all out loud per se.

Thanks for reading all this if you’ve made it this far.

TLDR: I had the “good” type of cancer and I feel like a fraud because I’m struggling to cope now.

[p2025]

Thank you for sharing your experience. I too had the ‘good’ removed with WLE, a re excision and radiotherapy. This year my first annual mammogram they found two areas of atypical cells and a number of cysts in my other breast. I am awaiting surgery for this to be removed.

I experienced imposter syndrome and survivors guilt as during my journey a close friend lost her father to pancreatic cancer.

on down days I think of the mountain lion analogy. I had a three legged juvenile mountain lion but I still had to fight it and recover from the fight. There are no winners in cancer and it was never a fight we signed up to

We just have to be there for the others thrown into the club without subscribing or agreeing to be part of it.

[ceirib]

Imposter syndrome! That’s exactly part of it.

[JoanneN]

@ceirib

You’re post resonated with me and I want to urge you to be kind to yourself and get some help if you need it . Make sure that you aren’t expecting more of yourself because you’re a Nurse - sometimes that doesn’t help because you really can’t be your own Nurse . Although you can’t entirely turn that part of your brain off sometimes you have to be a patient and accept that experience doesn’t necessarily mean a faster recovery . Cancer is not always something that is life threatening or requires very drastic treatment to prevent it from becoming that way but it nearly always turns your world upside down . It also doesn’t care about any other health / personal/ financial problems that you are having to deal with when it strikes .

Sometimes it’s the last punch that floors you because you’ve already taken too many . You are entitled to process and come to terms with what has happened to you . In our job whether face to face or not you need to be able to give and maybe you just don’t have that in you right now.

Please show yourself the compassion that you would show to a patient , their relatives or one of your own friends or relatives if they were to find themselves in a similar position .

In terms of your cancer you may have been lucky but in terms of your general health it sounds as though you are having to deal with a lot . We all learn to live with the worry of a recurrence of cancer but we also have to live with and manage health conditions that are permanent and like you when I had a health problem it led to me being diagnosed with other health problems and it changes your world and perception of yourself , your life , what you think you can do / achieve .

I also had a very low grade tiny cancer but actually took over 7 months off sick . When I did get back to work nobody seemed to think I had taken the piss in any way - in fact they said well done and how good it was to have me back.

After diagnosis part of me wanted to go to work but I kept setting the microwave off without having put the food in first / flying off the handle when people told me to think positive . After my first procedure failed ( I knew at the time that it had ) after I recovered from it I was a nervous wreck waiting for a check mammogram and then results to prove what I and my Radiologist already knew. After that it was surgery then my radiotherapy planning appointment arrived quite quickly and so that stopped the dilemma about whether to return to work in between but psychologically I don’t think I would have coped. After radiotherapy I had fatigue that tooks 3 months to resolve properly aggravated by a shoulder injury and personal problems - this sadly ended with my Dad going into a home . My Mum had died a few months before my cancer diagnosis and one of the hardest things I had to deal with after diagnosis and treatment was the fresh wave of grief that hit me .Before her death she was losing her mental capacity a bit but I just wanted my Mum and there was not even that shadow of her left . I also experienced flashbacks of the last couple of weeks of her life and rang our Trust welfare services twice .

There were lots of times that I said I was fine and that I was lucky - sometimes it was just a shield to prevent more questions but I also knew that I was lucky yet I couldn’t make myself believe it for quite a long time . Like you I felt like an imposter and occasionally I still do.

Just as I felt ready to return to work I went down with COVID for the first time which accounted for either the last 2 or 3 weeks of my sick leave .

However like you I also had some good times while I was off sick - cancer COVID and other life events between them have changed my attitude somewhat - I can enjoy a moment or a day intensely and they live in my memory vividly even now . Just because you are off sick with cancer or any other long term problem doesn’t mean you have to be constantly miserable .

You are entitled to process and come to terms with what has happened to you .I’m glad that you have a supportive boss but I also noticed that you seem to be physically somewhat isolated and that recently you were happiest when you were with family . Maybe I’m overstepping here but would there be a possibility for you to move and be closer to them ?

Sending love xx

[cloudyday1]

I feel this so so deeply and just relate to everything you are saying. I had to work through a lot of these feelings with a therapist which helped a lot. I realised that this guilt really got in the way of me dealing honestly with how I was feeling around the time of my diagnosis, pushing away hard emotions because “I didn’t deserve to feel that way”, “I was lucky”, “it’s worse for her etc”. Learning to validate my own feelings has really helped me as I now accept that many things can be true at the same time. I can be finding this hard, even if I perceive others to have a harder experience. It’s hard and deep work and I’m not an expert! I wish you all the best with it

[bluetit11]

I very much understand how you feel. I describe it to my family as feeling like I’ve had “cancer light” as I very fortunately avoided chemo and therefore didn’t need to tell lots of people.

The end of my treatment was my last radiotherapy session. No bell rung. No prognosis given. No scans done to check I’m clear.

I’m older (58) so mainly I deal with the feelings by ignoring them. I know I could pop into the Maggie’s centre to talk it through if it gets too much although i never ventured in during treatment. There are some resources on here too if you need them.

[ali20231]

Hi Welcome. I had the same as you last year, no chemo just a lumpectomy and radiation for 15 days. I have a neighbour’s going thru this awful time and I must admit I feel a bit guilty as I have had it much easier than she is. It isn’t easy for any of us so try not to feel guilty. All the very best for the rest of your treatment. Radiation is pain free which is a blessing. All the best for the furture.

[william]

Guilt is a waste of your mental energy in this case. You should feel guilty if you have been nasty to someone, or behaved badly, not because you are a bit luckier than they are.

But in all honesty, it takes about two years to come to terms with breast cancer, whatever treatment one needs. Getting over the fright is the worst. You can’t rationalise it, it’s a primitive reaction.

[africassnowwhite]

The MAYO clinic and National Cancer Institute developed a drug (Endoxifen) undergoing testing for years already that is way more gentle and effective than standard hormone treatment for your Breast cancer, please contact Dr. Goetz in the Mayo Clinic at Rochester Mn and confirm what I’m telling you, it saved my life without the intense side effects of Estrogen blocking drugs

[mell.5]

I was diagnosed at age77 last year when I had a scan for another medical issue. I was so very thankful, firstly that the cancer was found ( it could not be felt), and secondly that it had not spread to my lymph nodes. I had a lumpectomy, radiotherapy and commenced on hormone medication. Please dont feel guilty @e335173, and please don’t minimize your diagnosis. I do feel a form of guilt as I am also so many years older and feel so sad to hear of so many young women like you having to cope with breast cancer, with the treatment, and the many life challenges that come with it.
I wish you well as you continue your journey and also, thankyou so much for your work as a nurse, caring for children with cancer.

[e335173]

Thank you so much for sharing your story! There’s so many unpredictable emotions constantly changing by the day. I honestly relate so much to what you’ve written.
I think the phrase “I don’t feel like I had cancer” really hits the nail on the head! I’ve found myself thinking that because my treatment has been relatively straightforward and I haven’t needed chemotherapy, I somehow haven’t earned the right to be as affected by it as I am.

And I completely understand what you mean about other people moving on once you’re “cancer free”. I think that’s one of the strange things about an early diagnosis, from the outside, it can look like everything happened very quickly and successfully, while internally you’re still trying to catch up with what happened. There’s also the uncertainty of what comes next, which doesn’t necessarily disappear just because the tumour has been removed.