Invasive ductal breast cancer

Hi Belle38

Welcome to the forum, although obviously you'd rather not be here! 

I am just over 5 years down the line from being diagnosed and I understand totally how you are feeling at the moment.  I was actually older than you (51) when diagnosed and I remember feeling the same - I had IDC stage 1 and a lumpectomy and tablets.  As you say, guilty that you feel lucky and for me personally, I felt so relieved that I didn't need chemo. but also "I had cancer".  

Don't underestimate the effect that having cancer has on you emotionally - it really does knock you for six, doesn't it?  I think for me, it was suddenly realising that I was vulnerable and had never thought about dying personally and suddenly when you are told you have cancer, you do realise that it could have been a possibility. Early stages, obviously we are the lucky ones, but it is an operation that you have had, radiotherapy - and you have had a major shock.  I found I was grieving for the carefree person that I used to be and even 5 years later, I still don't quite feel as carefree as I did before my diagnosis.

It does get easier, I promise.  As each follow up mammogram happens, you begin to gain a little more trust in your body again, but I do understand how hard it is.

Kindest wishes for your continued recovery and annual clear mammograms, Lesley

Thankyou so much, you've described exactly how I'm feeling. I think because I've always been so strong this has made me feel a little vulnerable but I also know that we're not superhuman. So all the emotions are just going crazy. I've spoken alot about how I'm feeling these last few days and hadn't realised how much my body has actually gone through. I think I just need to step back and listen to others when they say rest. I've started yoga and can honestly say it's amazing how good you feel after. 

Thankyou for your reply, although we'd rather not be in this situation it's nice to know we're not alone x

Belle38 I just wanted to direct you to this link, as it popped up on the forum 'community news' section the other day, and it really helped me know I was not alone with the ridiculous feeling of 'guilt'!

https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/why-do-i-feel-so-guilty

I don't know if it's because we are women, or because it's normal for any cancer diagnosis to seem to be on this 'scale', but feeling guilty seems quite common!

You are 38 years old, any diagnosis of cancer is scary and comes as a massive shock!  And you are still having treatment and recovering from surgery, it's a huge thing to deal with. Your feelings are valid and understandable and I'm here to support you and tell you that you aren't alone.

My story is more 'lucky' than yours on the scale of things. I am 37 and have been diagnosed with a large area of high grade DCIS, which is non invasive. But I've had 7 biopsies, countless ultrasounds, mammograms and an MRI. I've got to have a mastectomy and from what I understand there is still the possibility of other treatment after depending on pathology. It's been a roller coaster few months! And I haven't even had surgery yet. But I also constantly feel guilty worrying everyone about it, as I'm not facing chemo or any of the really serious stuff. So you are not alone in how you feel. I hope my story helps a bit, even though its different than your own.

There are some useful insights on this link too about dealing with your feelings and counselling.

https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/how-are-you---counselling-support-for-people-living-with-cancer

Look after yourself, keep talking it through. This forum is a great place to get support xxx

Hi Belle38

I totally know where you are coming from.Isn’t it weird this guilt trip?  I haven’t started radiotherapy yet but I know that compared with many on here I have got off very lightly. My family tell me off for feeling guilty but cancer plays havoc with your emotions.

Evajean x

DaisyB thankyou so much for your reply. I'm really sorry that you are going through this too but very grateful for your advice and support. Listening to others and their experiences is really helpful. A friend gave me some good advice, she told me to think about how I'd support her if it was the other way around and would I think any different if she felt guilty for being 'lucky', it really hit home that. No way would I allow her to feel guilty, your right, Cancer is scary, the whole process is physically and mentally exhausting. Thankyou for sharing your story and I will check out the links. Take care x

Hi Evajean, thankyou for your reply. As much I wish others weren't going through the same, I'm grateful for advice and support. 

Hi Belle, 

Thank you for sharing. 

I am 45 and was diagnosed in June. Had a lupectomy on the 28th of June. Stage 1 and zero lumph nodes affected. After sending my tumor for an Oncotype test, I was told I don't need chemo (score of 11, very low). However, I've been told I need 3 weeks of radio + 1 week booster. And 5 years of tamoxifen too. It's been over 3 months since my surgery and I am only just starting to recover mobility in my arm and hand. A month ago I couldn't even hold a spoon. I have also been diagnosed with early stages of lymphoedema and advised to take nerve pain painkillers. I had to take a lot of time off work because of the side effects of surgery, which I was told by the oncologist team that was minor and lymphoedema as as result of the SLNB was something they hadn't seen. I've also been discharged from physio as there is nothing else they can do to improve my arm/hand mobility. Although I managed to scape Chemo, I also feel quite angry and guilty. Yes, one of the 'lucky ones' but potentially faced with a disability for life. I am due to start radio next week but starting to feel rather reluctant about any further treatment. I am terrified of the side effects (e.g. worsen lymphodema) and the impact the could have in my life. I am really craving for some 'normality'! As you, since surgery I have not only being drained physically but also emotionally. Although everyone's journey is different, I feel some of the feelings/emotions are quite common. Good to read that talking to others helps. Best of luck with your journey. :)

So sorry you are suffering with lymphoedema, that must be so hard.  I saw an advert in our local paper for Yoga classes for people with or post cancer. I intend investigating this once I have finished radiotherapy. On the website it says the practitioner offers physiotherapy and lymphoedema care. Have you looked at alternative therapies that might help ease the symptoms. I know you haven’t had radiotherapy yet and have been seeing a physio but it would be worth getting second opinion or trying something different. Fingers crossed that there is something out there to help you.

Evajean x

Your friend is absolutely right belle38! A great way to put the shoe on the other foot as it were. Take care xx