The interminable wait for treatment plan

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Hello.

I’m new here. I had my ultrasound and biopsy on Feb 23rd and radiologist then told me the likely outcome was cancer. It’s since been confirmed, but i don’t know the hormone receptor status or Her2 status yet. I’ve had PET scan which showed node involvement, MRI and a further biopsy on the dodgy node.

I’ve been given an oncologist appointment now for April 8th. The wait feels horrendous! I feel like my life is on hold. How have others managed this period?

I’m expecting the plan to be chemo before surgery as the tumour is 5cm but I’ve no idea how long it will be until I start?

I’ve told a few friends and my family, but I feel like I’m obliged to put an “everything’s fine” face on - even to them. I don’t feel like everything is fine at all and i’m really scared all the time. My children are only 4 (in 2 weeks) and 5 and I feel like I’m failing them as I’m routinely grumpy or snapping at them.

It just sucks doesnt it? I’m not sure what the point of this post is, but its good to get it off my chest at least.

Thank you

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My cancer was a small early one but just wanted to say that yes the waiting is awful. I tried to take a day at a time every day to do at least one thing that made me happy in the moment and when I was wobbling think of that one thing and hang on to it until I could do something else nice the next day. I took more exercise than usual which helped to quieten my brain a bit and cut down my caffeine intake particularly coffee as I felt more jittery after having it . I think we do tend to adopt this I’m ok attitude as we don’t want to make it harder for our nearest and dearest and it’s a good way to avoid intrusive questions from others . You could ask your BCN if there’s a support group in your area where you can talk to people who get it . If you live in a city I’ve heard that Maggie’s centres are very good . Keep posting if it helps as there’s always someone here xx

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Hey @bc43 sorry you find yourself here, I have young children too and beleive me you aren’t failing them you’re doing your best at a very scary time! Everybody will tell you the waiting is the absolute WORST!! Unfortunately the only thing that helped me was distraction and staying off Google, I would advise staying off social media too if yours throws up lots of BC stories as mine started to despite the filters I put on!!

I have a 2 and 5 year old, we had some of the best days out and had so much fun whilst distracting my mind. It’s too easy for our minds to go to the worst place and our brains to try and fill in the gaps for us but tell yourself “These are thoughts not facts” :heart:

It does honestly get easier once you know exactly what it is you’re dealing with. I was diagnosed with stage 1 BC at the end of October, surgery to remove it in December and I’m 2 rounds into chemo (just had my 2nd today). My children are none the wiser they have absolutely no clue, apart from after surgery I couldn’t lift them up for a couple of weeks so I said I’d hurt my arm at work. I’ve carried on working in between in quite a physical job, carried on going to playgroups with my youngest but just being safe around anybody who is ill and lots of fun trips out still. I have chemo during the day and just squeeze little rests and naps in but in a way with little ones they keep you going and you find a strength you probably didn’t even know you had :heart: I was so scared that I’d be too poorly to do anything with my daughters but if anything I’d say I do just as much but appreciate everything so much more! Sending you so much love xx

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Thank you. That’s really heartening and inspiring that you’ve kept everything going. I’m conflicted on what to tell my children. On the one hand I could keep it from them but on the other, I might lose my hair and my 5 year old is very bright and observant and will definitely have a lot of questions.

I’m still working too and I’m unsure about whether to take sick leave or not once I’m in treatment. My company have excellent sick leave policy and will pay me in full so I don’t know what to do really.

thank you for taking the time to reply

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I feel your pain, my 5 year old is the same and very hair obsessed so it’s been very important to me that I keep things as normal as possible. I decided to tell only a few people as a way of “damage control” and not getting sympathetic looks all the time, I know people mean well but I don’t feel ill and don’t need sympathy :joy: so I decided to only tell my Mum, Mother in law and husband. Then after my 1st chemo (4 months after being diagnosed :sweat_smile:) I finally told my Dad, Brother and sister in law and a friend who had been diagnosed to as I figured we could support each other and I’d probably bump into her at hospital at some point and have to own up :sweat_smile:, they were so shocked!

I’ve chose to cold cap and so far still have a full head of hair. So to the outside world/school Mums/friends/playgroup Mums I look fairly normal and I’ve been able to keep things normal for my children. It’s such a hard decision to make but I’m glad I didn’t jump the gun, if my hair does fall out I have a wig/hairpieces etc at the ready that look very like my natural hair, eyebrow pens/tattoos so I’m hoping I can get through the next few months without them knowing!
Its a hard one with work when you don’t know how you will feel, I’m self employed so I kind of had to carry on but I did slow down and call in extra help (IE unpaid family members haha).

You will find your feet with this whole crazy journey though and figure things out with lots of support from this amazing group along the way xx

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Thank you. I really hope you’re right and i do find my feet. I’m really grateful to you for taking the time to reply - even whilst you have so much going on. Big love and good luck with your treatment. x

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Hi , newbie here , don’t know how to use this yet , don’t know how to post my own post ,

I’m just waiting around for appointments now after being diagnosed yesterday after ultra sound , feels , mammogram , biopsy was told it’s was that fibo thing first untill my results yesterday ,

Like you all I can’t believe it’s me , I’ve cried and cried and cried and cried .

Don’t know what to do now nothing is normal to me now ,

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Goodness what a brave lady, mum, friend you are.

Never think you fail your children when you are coping with cancer. Or any illness for that matter.

Your life has been turned upside down within a matter of weeks. And you are such a young Mum. With all the demands that brings to you.

What is happening is huge. Never think you are being silly. You are being brave.

I am the other way round to you. They found 13cm Lobular Breast Cancer. Its also in 5 nodes.

I had mastectomy first, 4 weeks ago. All my treatment is post surgery, and I am waiting for CT scan results before that can even be planned for.

My friend had cancer in her 30s. With two children 5/7. She chose to have a mastectomy due to her father having breast cancer. But that was over 25 years ago now and treatment is very different.

She is still alive and has lived a full life.

Its important to be honest with yourself and get as much help from family and friends that you can. You need as much support as possible.

BCNow Nurses are great if you need to chat things through anytime. I found them invaluable.

The same with MacMillan Nurses.

I also gained support from BCNow Someone Like Me where you can team up with someone going through similar experiences. They have been invaluable, as everyone’s journey is different.
If your children are in school, try and rest during the day if you are not working. Treat yourself to nice things. I love having coffee and cake in a quiet cafe. Even on my own with a book​:wink:.

Talk to your friends. Some may not know what to say, thats fine, they are human, but they are still your friends, others you may find are just wonderful talking about cancer. So let them help.

You will also find new friends through groups and forums. Ask your local Breast Clinic about local support. Dont cope with this on your own. Grab everything you can.

Feel OK to tell your children you have been unwell. Hug them, tell them you love them daily. Play with them. Laugh with them.

If you feel overwhelmed take them to group activities where they can have fun without you having to do all the hard work.

Swimming is great, soft play even better. Parks are great to be in your own head whilst they find friends. Then they will have a nice time with Mummy, but its not all on your shoulders.

I was a single parent, so I know how hard it is to juggle children generally. Regardless if cancer. Husband or no husband, you will have times that overwhelm you. Plan you day. Art, TV films and popcorn are great activities where you can rest whilst the children are entertained.

But ring up those lovely Nurses. Find local groups. Get as much support as you can. Ive spoken to BCN nurses and feel like ive known them for years. They are approachable, human, kind, patient, knowledgeable.

Sending lots of hugs and strength. :people_hugging::flexed_biceps::heart:Xxx

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Dear tann

I was also told my lump was a fibroadenoma. It turned out to be a low grade rare kind of cancer called glycogen rich clear cell cancer of the breast. Although samples of my lymph nodes showed I had no lymph node involvement I was sure I would die of breast cancer.

19 years later I found another lump which turned out to be a new primary breast cancer of a different type, .grade, and size.

So there you are. Keep yourself busy and you should give it your best shot

Seagulls

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Thank you for replying , sorry to hear about your diagnose , I’m just finding the waiting around really hard waiting for my appointments , the night times .

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I was like you awake a lot worrying as I was living alone in 2003/4.

I was obsessed by cancer and dying of it but I had my computer in the bedroom and used to log in at night if I was miserable in the long night hours.

There are many people with breast cancer and it is a baffling disease. There are lots of kinds but treatment has improved a lot since 2003.

My latest diagnosis was not long after lockdown. June 2022. My cancer is er+grade 2 lymph node involvement

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Hiya sorry for late reply ,it’s really getting to me the waiting not knowing any thing more on my treatment , or anything of that matter tbh ,

I know there’s a time frame the NHS need to get you in by , I just feel like I’m left here just to do life .

But my life’s on hold at the moment .

How are you ? X

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Hello.

Please do not keep it all in, Yes we all wear the mask I’m ok, I’m fine, deep down its another matter. You are not a failure to anyone.

You do need to let the anger out cry, scream, believe me it helps.

I was lucky in a hospital that has mammogram, biopsy, CT scans in the same hospital.

Stay Stong

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I feel a bit tired today and we look after a dog called Ted today with a waggy tail and quite large teeth but the rest of him is small and furry. So I am looking forward to keeping my fingers away from his fangs.

I also do Speedwatch in the village to stop cars racing through our village at 90 miles an hour. My husband likes to speed so he thinks we are spawn of the devil.

I wish I could lie in bed but I am up instead looking at my phone and putting off cleaning my teeth. Writing about Ted’s fangs has reminded me to get going with my lecky toothbrush.

Seagulls