I did come to the forum weeks ago but hadn’t had final confirmation. I have now been told it’s double positive HER2 negative invasive lobular breast cancer. They tell me this is good.
I thought I was dealing with it, still in work full time and when I am there it’s like I can pretend everything is ok.
Last week I had a MRI, I was a blithering mess , couldn’t even confirm my DOB as so upset. The MrI was horrendous and went on forever. It’s ridiculous as a I was so upset after, couldn’t stop crying.
I have diarrhoea every day, and feel like I have a brick in my tummy. I am on nights all week, feel like shit. Just feeling sorry for myself. I am a really strong positive person, I seem to be spending all my energy on pretending everything is ok for everyone else.
I should have had a call from the nurse re further results of biopsies but she didn’t ring.
I have had to stop my HRT, and I know I should be grateful but out of all the things I am worried about it is stopping that, as it has literallly kept me functioning for the last 7 years and in work.
I am trying to do meditation, eat well, run, yoga etc but the stress and upset tummy just does
Not go away.
Hi Matilda
I am sorry you are feeling like this but it is very normal in the circumstances. I am at a similar stage to you - newly diagnosed with (hopefully early) BC - but still having investigations. Having good and bad days. I had an MRI last week and am waiting for that result. Everyone says the waiting is the hardest.
I retired from work recently so I don’t have that stress to deal with. I found work was a good distraction when I had a previous cancer scare - but equally I was not in a fit state to do my job properly when emotionally labile. You are the best judge of this but working nights is hard on anyone, let alone going through this stress. Have you told anyone at work or let HR know what you are going through? Maybe you would benefit from some time off work?
Be kind to yourself. You don’t have to be strong all the time. Who is supporting you? Do you have a partner or friends to confide in?
I also stopped HRT when I had my first biopsy 2 months ago. Although the hot flushes have come back, they are not as bad as they were previously. You may find it is not as bad as you think?
How long has the upset tummy been going on for? Is it stress related or is there another reason for this? Maybe you can get an appointment to see your GP and get this assessed as well as discussing the stress/diagnosis.
Can you call the nurse again to get a result. It’s the uncertainty that is hard to live with.
Hope you find your way to move forward soon. I am not enjoying this bit but try to think what it will be like in 6 months time and hope I will just look back on this time as a bad patch.
Hello ladies and welcome to the forums, I’m so sorry you both find yourself here
It is pretty much universally acknowledged that the stage you are both at, an initial diagnosis but the wait for more tests and results and treatment plan, is the most stressful part. Once you have a treatment plan and know what you are dealing with it does become easier.
You both seem to have a very good tool box of coping strategies, but receiving a cancer diagnosis pushes everyone to the limit: it feels like everything is out of your control.
Please believe me when I say there are no prizes in breast cancer world for coping, we all deal with it in our own way. The breast cancer “warriors” you see have all been where you are now and have all had very bad days
Sending you both lots of hugs, please feel free to reach out for whatever support you need whether here on the forums, the nurses helpline or any of the other services offered by BCN and other cancer charities
So sorry to hear what you are going through. Hopefully it will be a bit encouraging for me to say I had exactly the same type of tumour 17 years ago. 4.5cm invasive, hormone pos, lobular, with 3 positive nodes. I had a mastectomy, chemo, radiotherapy and oestrogen blockers(for 10 years). Also, six years ago I had a second primary in the other breast. This one 2,5cm, invasive ductal, herceptin pos. So second mastectomy, more chemo and herceptin.
Today I am fitter than I have ever been. I’m just about to do run 2/week 7 of the ‘couch to 5k’ running programme. So, for all you ladies going through it just now, there is every chance of a good healthy life to follow. Just try and stay positive and get through one step at a time. (Bit like my jogging)
I wish you all the very best with your treatment pathway. I think mentally it gets easier once you start treatment and feel like you’re doing something to put it right.
Hi @matilda1 I’m so sorry to hear you’ve had a diagnosis confirmed, but very glad you’ve reached out here.
I have nothing to add to the advice from lovely members here except to say that every feeling you’re having is completely valid and understandable. I hope you find the forum a supportive place, please know that our nurses are also here to chat through any clinical questions or worries.
You can get in touch with them here on the forum on the Ask our Nurses your questions board or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Hi Hun
I am so sorry to hear how you are feeling. I was diagnosed with stage 2 musanous breast cancer, hormone receptor positive on Monday and I am also trying to keep working but I feel so exhausted.
I think you need to be kind to yourself. Your body is under attack and you need to treat it gently. Perhaps more yoga than running and a healthy diet is great but appetites can change with this, mine has, so make sure what you eat is tasty and appetising to you as well as good for you.
Can you call the nurses at the hospital to see what they suggest for your upset tummy? Can you talk to your employer about your shifts while you are struggling with this? It is worth asking. My employer has been really helpful, I hope yours is too x
So sorry to hear of your diagnosis . Like you I found the words of the medical professionals very hard to equate with my diagnosis ( and I am one BTW) - on the one hand they make it sound almost as though it’s nothing yet on the other it’s cancer ( just that word strikes fear into pretty much everyone’s heart ) and it requires you to have surgery and other treatments . It completely messes with your head but it will make more sense in retrospect . The stage of waiting for results is almost universally acknowledged to be the most stressful time of all.
One of my friends who had it a few years before me said that she had to rescue everyone she told - she had to be the strong one who was saying everything was going to be ok whilst not believing it herself. I think that’s pretty typical because I had to do that for my Dad and my partner and it feels so unfair and takes a lot of energy to be both the person with the problem and the one to pretend that there isn’t really a problem . However there were a couple of friends that I could spill over to and be honest with - and if you have someone like that in your life then please talk to them because honestly it will be invaluable right now.
As for feeling positive well if it doesn’t serve you right now then screw that . I was mainly angry - I was low grade early very treatable but diagnosed after the worst 3 years of my life just as I thought things were starting to turn around. I got pretty sick of people telling me to think positive so after a while I cut them off and said I’m fine I’m lucky even if I didn’t feel it . I used my anger to help me get organised and things done as it was coming up to Christmas .
Respect to you by the way for continuing to work and be on nights which is hard at the best of times.
You’re not the only person who has struggled with the MRI and a bit of a cry never hurt anyone .
I would advise talking to your GP surgery as there may be something they can give you to relieve any symptoms from coming off HRT and also if the diarrhoea continues . I don’t get this now but a couple of times I have had this after very stressful events and was told it was irritable bowel syndrome and it responded to medication . Some people have taken medication for anxiety as well , you may decide like me that that isn’t for you but there’s plenty of justification for you to feel the way you do and to need it .
Keep going with the Yoga - I also found that being outside in nature helped and tried to take one day at a time . Every day I tried to do one thing that gave me a little joy then in the evening when I was struggling mentally I held onto that lovely thing - a swim in the sea , a beautiful sunrise , cup of tea with a friend whatever and promised myself I would do at least one lovely thing the next day .
Thanks very much for the responses, there is some really good advice in there. Thank you for taking the time to reach out, I didn’t know there was this many nice caring people !
I am still waiting for a call, but fingers crossed it will be by the end of the week. I am sure they do their MDTs each Thursday.
I don’t have to do nights all the time, it’s a rota for force cover so probably do one lot a month. To be honest they are really busy and I really enjoy them. My upset tummy has completely gone, I am convinced it is a reaction to my over reaction to certain things. So I will be fine now until the next appt etc when it will start again and then take weeks to calm down.
Due to nights not done any running, but yoga , weights and meditation.
Work have been great, very supportive. It’s like you say, it’s just the waiting around, stuck in limbo, can’t plan etc.
Once again thank you for your support , the forum has really helped me.
