Delayed oncology

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1

I was diagnosed with grade 3 breast cancer last week and have been struggling to eat and sleep since. I’m spiralling that every feeling in my body is a sign it must’ve spread. I was due my first oncology appointment tomorrow and was hopeful I’d feel a bit better after that as I’d have been able to express my anxieties (hopefully been reassured) and have a treatment plan in place, but I just got a call to say my Her2 results aren’t back so my appointment has now been pushed back a week.

Is it common for things like this to happen and is the delay likely to impact the outcome I.e., couldn’t cancer be spreading in this time?

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This exact thing happened to me. I had my plan delayed by almost two weeks because the HER2 result wasn’t back.

I felt like I could feel the cancer growing, I got random pains that I was convinced were mets, I made my husband photograph a random mole on my back because I thought it was ‘new’ and ‘looked dodgy’. It was the most stressful time.

Then I got my CT results back that it wasn’t stage 4, the HER came back so my surgery was scheduled in 3 weeks later. The tumour did not grow or spread at all.

Do not panic about a delay of a week. Cancer takes years to grow, it doesn’t suddenly move faster because we’ve spotted it. We just feel like it does :sweat_smile:

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3

Hi,

I was biopsied and told it was very likely breast cancer on 10th Feb (I’m ‘only’ 36, so quite a shock for me), went for an appointment on 18th with my surgeon who confirmed it was grade 3, but my oncology appointment wasn’t for a few weeks as it took ages to get MRI imaging and pathology results back. Even then, my chemo was delayed a further week as they didn’t have capacity at the treatment centre. So, I didn’t start chemo until 23rd March. They were quite ‘relaxed’ as they said not to worry about it growing at that point or of it impacting on the outcome. Everyone I have spoken to said it’s quite common for pathology to take a few weeks and only then can they decide how to move forward.

Hope that helps. Wishing you luck on your journey- I know how anxiety ridden it is. I’ve currently done 6 sessions of 16. I didn’t believe people when they said it’s easier when you have a treatment plan, but honestly it is, as you then get into a routine and start counting down and you feel like ‘something’ is happening whereas before you’re pretty much a sitting duck, just waiting for the phone to ring.

All the best xx

4

Thank you so much for your replies, they really do help. I’m also 36 with 2 small children (2 and 4) so this came as a complete shock and finding it all really overwhelming at the moment

5

I feel for you- it’s not nice at all and feels so unfair. I have a little girl who is 6 and I couldn’t believe I had to sit her down and find a way of telling her what was happening. But if it helps, she is coping really well. Kids are so resilient. I haven’t used words like cancer, tumour or lump with her. I’ve told her that mummy has a booby spot and it’s inside, so you can’t just squeeze it like a normal spot on the surface. She knows that I have to have special medicine one day a week to make it smaller and that I have blood tests one day a week to check how much medicine they give me the week after. She asked if I had to have an operation to take it out, considering it’s inside- I explained that yes, I did, but I’ve had operations before and feel ok about it. She told me she’s seen an episode of Bluey with an operation on it, so feels like an expert :rofl:

I am doing neoadjuvant chemo (before surgery) and was worried I wouldn’t be up for doing things with her or keeping up with her. I was wrong- week 1 of chemo was a bit tough with side effects, but they adjusted my meds and have been pretty much ok since- we’ve played in the garden, gone for ice cream and to the shops. My treatment days are on a Monday which helps because by the weekend when she’s off school, I feel fine so far. We have a special Movie Night on a Friday with snacks that she looks forward to and one day a week (the day after treatment), she goes for a sleepover at my parents’.

Personally, I was absolutely devastated and paralysed by the idea of hair loss. I’m doing the cold cap and though not pleasant, it has helped. I also ordered a couple of quick wigs from Etsy from headscarvesbyciara which came quite quickly and are easy to pop on and off round the house because they’re attached to headbands or hats (my little girl didn’t want to see any hair loss and I’d rather she didn’t too), but she’s aware it’s a possibility. I started wearing the wigs early on, so we’d all get used to them. They’re also easy to pop on when the kids wake you in a morning. I bought my daughter a cheap one off Amazon attached to a hat, so we could match and she finds it hilarious and likes playing with it. I have also ordered a hair system of human hair from nchair therapy in Huddersfield which makes systems that are to your measurements and hair colour- the woman called Niamh who does them is amazing- it was expensive, but my parents bought it (over 1,000)- it takes 45 days to make, but is worth every penny. I plucked up the courage to see a friend the other day and she had no clue it wasn’t my hair. Niamh can also make extensions out of it if you do lose hair and can then attach them to any re growth- you can see what she does on Instagram. There’s some good lashes Eylure do and also if you follow Jess Mullen, Olivia McVey and Emmy Coombs on Instagram, they’re amazing!

Obviously, everyone’s treatment plan is different and you may not even do chemo, but reading up on the above may help, if you do have to face it. Research has kept me sane.

With regards to the not eating or sleeping- I was exactly the same until I had a plan in place. I just felt so out of control and desperate. It does get better. What helped was planning- I bought some comfy clothes, thought ahead in terms of pyjamas, looked into skin products. That kind of thing.

Hope that helps- here if you ever need to chat :face_blowing_a_kiss: you may not feel like you have, but you’ve got this xxxx

6

Also, I think my HER 2 results took about 3 or 4 weeks to come back, so don’t be alarmed if they’re not back next week.

It turns out my breast cancer is triple negative.

7

Thank you so much, that’s reassuring. I’m just spiralling a lot about some aches / pains and tingling I have which were there before I found out about my diagnosis so it was disappointing that I now can’t share them with the oncologist today! You’re right, it definitely feels like it can suddenly spread rapidly just because we know about it :sweat_smile:. Thanks for replying zx

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I know, it seems like utter madness to be needing to have these conversations! I’m yet to speak to my 2 (though I doubt the 2 1/2 year old will understand much) my plan is to wait until right before my treatment starts. Oh bless her that’s so sweet about Bluey!

When I was diagnosed they said the plan would be 6 rounds of chemo, surgery then radiotherapy but I know that could change and won’t know for certain until I see the oncologist. That’s really reassuring about how you’ve been feeling / what you’ve managed to do with your little girl as that’s certainly been a worry. We’re lucky to have supportive families so I might also suggest sleepovers once a week, my eldest doesn’t start school until Sept so we don’t have that to juggle!

That all sounds amazing wigs / hair / lashes wise - thank you. I really appreciate your reply xx

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Yes, I also waited until a few days before treatment to tell her, so she could digest and ask any questions. I also wrote to her school (not sure if yours are at nursery) to explain the terminology we’ve used with her and told family and friends as well, so they could use the same terms in conversation.

I 100% was expecting to be laid on the sofa vomiting, but that has not been the case at all, as modern medicine helps! I find it helps that she goes for a sleepover the day after treatment. I wanted her to see me when I got home from chemo days cos I think psychologically it helps her to see that I’m ok. Then on the day after, as she goes to school and then a sleepover, I can really rest.

You’ve got two to juggle which is harder, but you’ve 100% got this.

I’m doing 16 lots of chemo- 12 continuous weeks and then will have 4 rounds every 3 weeks. I’ve done 6 of the first twelve, so am halfway through that first bit. Keep ticking them off :roll_eyes::woman_facepalming:

Meant to add in terms of make up- I’ve never been great with eyebrows- Revolution do a great stamping kit that’s not expensive.

We’ll all get there! Xx

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Hi @tm89 ,

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Charlotte

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11

Hi @tm89 ,

Thanks for posting.

We hear from many people who struggle after a diagnosis of breast cancer. The spiralling feeling you describe seems so real and it’s easy to assume that every sensation in your body is a sign that the cancer has spread.

At times like this, it can help to talk to someone about how you’re feeling and ask questions. You are very welcome to call our helpline. Our helpline team have time to listen, talk things through and signpost you to additional support and information if that would be helpful.

As @treacle says, it’s quite common for results such as HER2 to take a few weeks. These results are important as they help your treatment team decide the best treatment plan for you. It’s understandable that you’re anxious waiting for these results, but as @demimiray says, cancer usually takes a long time to grow so this short delay will not impact your outcome.

You mention in your post that you are 36, so you might be interested in the tailored support we offer specifically for younger women with primary breast cancer who are aged between 18-45 years. This includes our Younger Women Together events that are run face to face and online. This support offers the opportunity to meet and share experiences with other younger women and get expert information in a confidential space. We also offer a range of free supportive services which you may be interested in.

You might also find our information about talking to children useful together with information from the Fruitfly Collective when you feel ready to tell your 2 children about your diagnosis.

As mentioned above, please do call our helpline for more support. You call will be confidential, and the number is free from UK landlines and all mobile networks.

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Best wishes,

Vic

Breast Care Nurse

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