Very similar to myself….all surgery results clear, but re graded from 2 to 3…..so, off for oncotype test it went! Now waiting for appointment with oncologist to see how beneficial chemo would be…..as you so rightly say, it’s the mental anguish that is hardest to bare 😖
Good luck x
Yup! Physically fine, but mentally in pieces. Not the usual way of illness at all, and really hard to deal with. xx
thank you for your reply! I decided on Monday not to call as I figured likely that consultant could be on leave or something. Then I got a call Wednesday with an update on my surgery results by phone. Mixed news; surgery successful so no more needed but cancer re-graded from 1 to 2. Now a sample is being sent to US for Oncotype DX test to work out if I would benefit from chemo. My appointment is still on 25 August by which time those results should be in. A long time to wonder & stress about a potentially different treatment plan which would have far greater impact on day to day life. Since this all started it feels like you are constantly going from one set of worries to another & so much waiting each time to know what’s what. I have felt physically fine through most of this so far; it’s the mental anguish which has been harder ☹️
@AnnieV I'm a BC novice too, but what I have realised is that hospitals never think to tell you WHY things take so long, and if you are like me, you just worry and panic more with every delay. I was in bits when a letter came instructing me to go to a big hospital instead of my usual one - I was convinced it meant things were looking bad, but when I called to check, it was just an admin error. A delay is unlikely to mean anything sinister. I have come to realise that a wait for us just means a lot of NHS teamwork going on behind the scenes. It could just be that someone is on leave and cannot do a report. That said, you shouldn't feel worried about making a call to ask why and to get things straight.
Hope that helps a bit,
Hi ladies. I just got my next appointment for 25 August to discuss pathology. This is over five weeks from the op date and I was expecting an appointment three weeks later. Also signed off work for three weeks and assumed that at the appointment it would confirm I would be fit to return to work or not. BCN said that if I feel well I can return after three weeks. Psychologically my head is all over the place as it seems so long to wait to find out if lump was removed with clear margins or if more surgery required or what stage cancer is at. Can I read anything into fact that appointment is later than expected so I can’t be that urgent or is that irrelevant? The waiting for the next event is a real mental struggle, harder than the physical discomfort I am feeling 😩
@AnnieV and @Lemonsqueezy - thank you for your kind replies. When I left hospital I was terrified of lymphoedema, I became a bit obsessed and read loads, grilled my medical team and also contacted the wonderful charity for further advice - Lymphoedema Support Network (www.lymphoedema.org). 4 years on I have calmed down a bit and now just do what I can to minimise the risk. There are guidelines about what not to do, but sometimes it seems just bad luck. It is true that if you didn’t have a node clearance the risk is much lower. Mostly you want to take care not to get your bad arm infected (so watch for insect bites - wear bug repellent, and treat ) or burnt, by sun or oven. But even if you do, don’t panic but consider getting medical advice as you may need antibiotics for an infection. Other things I was told - try not to do repetitive actions without a break (so sadly no long periods of ironing!!), don’t carry heavy bags with your bad arm or have a tight bra strap or bag across your shoulder that inhibits flow of lymph fluid. Exercise and keeping your arm moving are both good. I have found different people have given different advice, so you may be given other suggestions - but I wanted to give you a few ideas and hopefully reassure you. Sorry, I shouldn’t really offer unsolicited advice - but it’s a pet topic of mine!!
@Lemonsqueezy - I have just read your amazing blog, thanks for sharing it. But I am so sorry to read about your Mum too. I wish you both all the best as you go forward for treatment.
@AnnieV - I'm so glad you asked the question about shaving, I've just had a shower and had the same thoughts! I was told no driving for two weeks either and so looking forward to getting some independence back.
@Evie-S I never thought about wet v dry shaving either. Great advice. Thank you.
Thanks Evie for your reply. I think I had two weeks written down somewhere about not being able to drive. I will check that, along with my insurance. I have been signed off work for three weeks and that takes me to the time of my next appointment. I think work will also want to refer me to occupational health before I return.
I have read many conflicting things about shaving and am very aware of the risk of lymphoedema. (Which appears to be a risk for evermore now). Fortunately I did not have a full axilla clearance so hopefully that will reduce the risk. Some say to use a cream others an electric razor, but before I splash out on that I will see what my BCN recommends. I hadn't thought about dry vs wet shaving!
Hi @AnnieV - I’m really sorry to read about your Mum, of course that will add to your emotions.
I just wanted to reply to your question about shaving your armpit. I was advised not to use a wet razor but instead to use a dry one. This is more important when you have lymph nodes removed, which I did, but might be worth asking your BC nurse for advice in your case. For me I need to be careful not to get infections in my bad arm or it could cause lymphoedema, and it’s more likely that I could cut myself with a wet razor than dry.
I also hope it won’t be too long until you can drive again - did your medical team advise you how long? I definitely felt better once I had some independence back again.
Best wishes, Evie xx
Thank you for sharing your blog. I am feeling calmer today. There is still an overriding sense of unreality about the whole situation but can only deal with one chunk of it at a time. My boys finished school yesterday and I am contemplating what the summer holidays will look like given what I can do now is quite limited. My husband will have to be sole driver for now if we go anywhere, but I don't feel inclined to go too far anyway. I will need to look at my insurance policy I suppose as at some point I will have to drive again. I am starting to wonder if it is ok to shave the armpit on the affected side and when I am allowed to; will contact BCN. I know it is trivial but anything to regain the sense of self you had before cancer struck seems important.
I am sorry about your 'double whammy'. I can identify in a way as my mum fought a rare leukaemia for nearly five years. She passed away in Jan 2020, then we went from that into global pandemic and life turned upside down again. Felt like there was no opportunity to grieve her properly. And then 16 months on the discovery of my lump and what turned out to be a rare breast cancer. Feel like I am walking in her shadow; it's surreal.
Using this forum makes me feel less alone in all of this. xx
Hi AnnieV 🙂
How are you feeling now?
It's so normal to have such fears, I'm starting to have them myself. Be really kind to yourself physically and emotionally. Blessings x
i think that it’s quiet normal for you to feel this way we all have our worries and concerns but do speak to your Bcn and mention how your feeling
Take care and be kind to yourself
Definitely one day at a time. Take care and make sure you give yourself lots of treats and kindness. Evie xx
Thank you for your messages ladies. I feel a bit better today for writing down some questions for my next appointment. Will try to take a day at a time in the meantime to focus on recovery from the surgery. Best wishes to you xx
Hi @AnnieV - from my own experience and reading other chats on here I would say that your fears are very normal, and I would definitely discuss any questions or fears at your follow up appointment. Otherwise your mind will continue to race ahead and imagine the worst. I have a great book by Frances Goodhart and Lucy Atkins called The Cancer Survivor’s Companion in which they remind us that “fears are not facts” and to try to deal with facts only. Easier said than done of course, but it’s worth bearing in mind.
Another thing to consider is that general anaesthetics can knock you/make you feel anxious etc - I felt dreadful after my GA. I didn’t know about that side effect but discovered it later and that helped to make sense of my really low mood immediately after surgery. That might not be the case for you, but it’s a possibility.
I really wish you all the best for a speedy recovery and please continue to chat and use this forum as you go forward, as much or little as you need. I’m certainly happy to chat more about fears if that helps - I had my surgery and treatment about 4 years ago now. Sending hugs, Evie xx
Hi Annie I had the same operation as you last tuesday, i have only had one bad day where my emotions were all over place. But i also have the same thoughts as you i think thats quite normal in our situation. i wish you well and a speady recovery.
I had my sentinel node biopsy & removal of lump yesterday & was relieved & grateful to find out that my nodes were clear. As I lie here with sore boob my mind is spiralling as to what other cancer I could have that could be lurking somewhere I don’t know about. Does anyone else have fears like this? I tend to have heavy periods (I went to GP 5 years ago about it; was referred to have scan which was normal) & now thinking what if I have uterine cancer or am at risk (because of hormonal imbalance; my bc is ER+ PR+ and Her2-) what are the implications for using tamoxifen etc etc. Maybe I am just overwrought! But worth mentioning this at my follow up appointment in three weeks?