Newly diagnosed

Hi Morgs, sorry you find yourself joining this club. Daughter's first appointment at the breast clinic was within two weeks of her GP appointment but for various reasons - scans, tests, more biopsies, meetings, discussions about what should be done first, etc - it was 10 weeks before any treatment started. I don't think that's uncommon. I feel for you, this waiting is definitely the worst part. Things will be easier to cope with once a plan is made and your treatment starts.

Sending love, strength and a big hug. xx

Hi Morgs24,

I had a lumpectomy some months ago and lymph nodes removed. I waited three and a half weeks for my results and had the same cancer as you, I finished my five days radiotherapy a few months ago and have been told I’m clear, but need to take one Letrozole a day for five years. It is a shock when you are told and it is important you take a bit of time to let it register and sink in. The strides made in modern cancer medicine these days is amazing and they can do so much for you. However, there is so much you can do for yourself too.

You have made the first big step by finding the Macmillan site, also do visit your nearest Macmillan centre, a list is on here, or ring them on 0808 808 0000, they are superbly helpful and give you lots of great info, do walks, talks, help with benefits, bills, open 10-4 Mon-Fri for coffee and chat and lots more. Please also get a good support structure in place, family, friends, good work colleagues, I’ve lived on my own for nigh on forty years, but realised you can’t do this on your own. I also go for a short walk every day (British weather permitting) and do a daily diary, this is mega helpful, as it gets everything off your chest and out of your system. It is important during the day to keep yourself occupied, hobbies, interests etc., it stops you from dwelling on what is going on. You may also find it beneficial to listen to a meditation podcast, they really help you to relax especially when you are trying to get to sleep. I use one called ‘Go Gently’ by Christine Elizabeth Smith, it does a lot for me. Whatever you do, do not visit Dr Google as there is so much conflicting information, your head will spin and it will stress you out, listen to your medical team and ask your breast cancer nurse as many questions as you want. Also, you get great support on here.

I know it’s hard sometimes, but try and keep as positive as you possibly can, have positive people around you and dump the negativity, above all, be kind to yourself - I promise you, you will get through this. You are never alone and can always come and chat to us shower in here.

Keeping fingers and everything crossed for you.

Take care and big hugs.xxx

Hi Morgs24

I started chemotherapy 7 weeks after my first Dr appointment  which was just over 2 weeks from seeing my consultant. I was on Pacitacil chemotherapy weekly together with Phesgo injections. 3weekly 

Mastectomy was 4 weeks after chemotherapy finished. Phesgo changed to Herceptin injections every 3 weeks for a total of 1 year I also take letrozole daily.

we are all different and our treatments are individual to each of us.

i was worried at first and just wanted to have the surgery until it was explained why. I had 2 tumors in my left breast one of which was completely gone after chemotherapy.

Hope you get your appointment soon and be assured that you will get the best treatment for you.

1. Take care Xxx

Hi all

Thanks for all the information and we'll wishes

Received a letter this morning 1st chemotherapy appointment 10th December, was told I was on a 2 week pathway and would see someone within this time frame ,have been In touch with my bcn left a message, waiting for her to ring me bk ,it's really not installing much confidence in  the breast care team at the moment for me

Hi Morgs24,

It might be wise to try your bcn again, I leave a message and they normally ring back within the hour.

l know this is a very anxious time for you, but I think you seriously need to contact Macmillan. They have people who deal with different things and may be a big help to you.

In the meantime, keep yourself occupied as much as possible and as hard as it is, think of the positives - that’s what helped me a lot.

Let us know how you get on, or if you just need a chat - we are all in this together.

Here’s to the Booby Brigrade!

Love and hugs.x

Hi Morgs24 I'm sorry you find yourself on this forum, but it is a great place to come and share your concerns, vent and ask about other people's experiences. The waiting is awful, there's no way to sugarcoat it. I was diagnosed 4 weeks ago, and am waiting another 3 weeks for surgery to start (I will have mastectomy first). Weirdly, i actually don't mind all the appointments and 'cancer admin' that have been taking up those weeks, as at least it feels like some prorgress is being made in dealing with this. I'm sure that novelty will wear off.

The fear of spread is very relatable. I had a Pet CT scan and have been told 'a few weeks won't make any difference' wiating for surgery. Ultimately, I'm in a queue and have to believe that the people being seen before me are in a worse situatiion and need their surgery sooner. Accepting that is hard, but helps me feel a bit more empathy and reduced by toddler tantrums about the situation (of which I've had a few (in private!))

If you are able to, I would recommend getting through this time with small treats and acts of self care to help pass the time and reduce the cortisol levels. Going out for a coffee somewhere, having lunch with a friend/relative, a trip to the cinema etc. During those moments I can vent/talk about it for a bit but also focus on doing something nice for myself, before all the treatment starts. I have found concentrating at work really difficult. I work from home and in all honestly have been skiving a lot because most things that seemed 'a bit hard' before are pushing me over the edge with overwhelm.

Also, be your own best advocate. So far I've discovered that the NHS is great in a lot of ways, but things easily fall through the cracks, or departments fail to talk to one another. Be proactive - if you're not sure about something or concerned soemetning is talking too long, call up the hospital and ask for information. 

I hope you get some answers soon. Call them up.

Good luck x

Great advice on being your own advocate. Sometimes we are afraid to question and we just wait, but there are times when we need to be a bit more pushy. 

I found my lump on 3/10/24, had initial mammograms, ultrasound and 4 biopsies on 6th.  Got the results on 16th and was told that it will be a left breast mastectomy but without further tests unable to confirm when I will have chemo before or after surgery.   Need MRI, CT scan and bone scan as evidence of cancer in the lymph nodes.   MRI and CT scan scheduled for 22nd.  Yet to hear about the bone scan.

Provisional date to discuss treatment plan 31st October assuming results are back from scans otherwise it may be the week after.  So that is around a month with no treatment as without all the facts the best treatment plan can't be decided. 

Like you I am really concerned that it may have spread but I guess it is best to treat the whole problem and not just the initial identified area.  It feels like it is taking forever but when appointments happen quickly that is equally scary as It makes me think it must be really serious and needs urgent treatment. 

Keep getting an upset stomach and a tickly cough which I am sure is just stress but at other times I think it is proof that I am riddled with cancer.  Gently losing the plot on the inside with a calm and composed exterior!

Sorry my rant probably hasn't helped you at all, wishing you well with your treatment and may it happen promptly x

Hi Harvestmoon we are in a very similar situation, perhaps i'm a few weeks 'ahead of you' (got diagnosed on 20thish september with ER+ HER- invasive ductal with spread to two lymph nodes. Breast tumor 55mm, told from the start that mastectomy would happen. I'm 38 y/o).

Things should start to move faster for you in the next few weeks. I've had tons of scans, tests etc. Waiting for CT scan results was horrible, then they told me that there were four suspicious areas on this when results came back, got referred for a Pet scan to get a clearer picture. Thankfully I had a really proactive Breast Care Nurse who got the Pet results rushed through and was able to report back the next day that the Pet looked OK. The waiting is the worst part in my opinion. I was a wreck, felt completely numb. I had the same thing. every single twinge and ache in my body had me convinced that it had spread. I had aching hips and legs and was convinced it had gone to my bones. During the CT and Pet wait I really felt I was confronting my own mortality face on. But it turns out it was my body and mind on overdrive with anxiety and they are clear. So try (and I know this is way easier said than done) to keep an open mind that there could be better news coming.

No treatment starts until step 1: left side mastectomy and some lymph nodes will be  removed on 6th November. The waiting til then is also agony. The tumor hurts and I had a terrible week of worry and sleeplessness last week. but went to see surgeon to discuss further detail about my surgery and somehow, even though they are explaining really difficult and horrible things, it was reassuring to hear him talk confidently about how they are going to deal with this.

Have sent you a friendship request - might be good to stay in touch since we have similar diagnosis and timings. x

Thank you for your reply, I have now had the breast MRI and full body CT scan but still haven't heard anything about the bone scan.  Concerned that this will hold everything up!

Not even sure what type of cancer it is although I think it's one that responds to hormone treatment. 

I have already found that sharing my thoughts,  fears etc on this forum is helpful and helps me to let them go.

Wishing you all the best on 6th November and glad you are feeling a bit more reassured.   We can only trust in the experts and try not to worry about things that we can't change.