Breast Cancer diagnosis at the start of July

Hi, I’m really sorry to read your diagnosis. It sounds like they are waiting on the biopsy results. These usually take around a couple of weeks. They are discussed at a multi-disciplinary team (MDT) meeting, which consists of surgeons, consultant radiologist, oncologists and breast care nurses. Here, they will discuss your treatment plan, and then will discuss it with you, although from memory it was the oncology nurses who discussed it with me as I had chemo first. Xx

Thanks for the info  the waiting is awful as people keep asking me what’s happening and I end up just saying your guess is as good as mine! I thought they may be quicker as it’s just the second mass they were testing this time which also didn’t show up on the MRI so I hope it’s just a cyst as the tumour is enormous I don’t want more than one! I will give it until the end of this week then and then maybe give them a call  x

I’m really sorry to hear you are going through this.  I was diagnosed last November but didn’t have surgery until February due to additional biopsies, MRIs etc then started chemo end of April..My appts tended to b every 2 weeks so I think I would b chasing them if u don’t have an appt date.Do u have a breast care nurse u can contact?They r usually very good.xx 

Thank you, I did speak to a MacMillan nurse mid July but they are very hard to get hold of, they must be quite busy I think. I will give them a ring towards the end of the week, that must be my breast care nurse? I was just handed a card when I was told my diagnosis and told to phone them if I wanted to.

Hopefully I may hear something before I call them, it’s so sore I’m getting fed up with it, I just want it shrunk and gone! How is your chemo going? Have you found it ok? x

I was seen by a nurse at the hospital after my diagnosis.She gave me lots of information along with their contact details and they are always very good at getting back to me quickly.I was initially having a lumpectomy but I have invasive lobular cancer which doesn’t always show up on mammogram so the small tumor they initially saw turned into several tumors on MRI so I needed to have mastectomy.I also had full lymph node clearance as it was in 3 lymph nodes.I have found chemo unpleasant but not unbearable.Definitely better than I anticipated and the time has flown!I hope u get some answers this week but if not I would try and chase them up.xx

Hi, your nurse sounds very good! The dr I had today requested a MacMillan nurse to be in with me as I was alone but they were too busy I had an appointment today with a different doctor as my consultant is on holiday, it is ER and PR positive but they don’t know if it is HER2 positive as the result was inconclusive, they are going to see if I can have an appointment with an oncologist and they may do another biopsy. I am stage 3 and I first went to the dr in May and I am not very far ahead with things as it’s nearly September, now I am waiting to hear again. This doctor mentioned mastectomy and said as I am only 42 they would offer reconstruction but it was a very long waitlist and it wouldn’t look normal and they would remove a huge area of skin from my back, all that would look normal would be a contour through clothing. I don’t know if I can cope mentally with only one breast for years, this has floored me as my consultant said chemo to shrink and then lumpectomy. He measured it with a measuring tape and said it was now 6cm and it was 3.5 about 4 weeks ago on ultrasound. Nobody seems to know who my surgeon will be, my worry is now it has been a lot of months that it has probably spread everywhere as it is stage 3 anyway. I don’t really know how to go forward with this every time I have an appointment it’s another 2 weeks, this will be my third ultrasound and biopsy so my 7th appointment and still I have not started any treatment.

sorry for the big rant but I feel totally helpless, I actually feel like telling them not to bother with anything further

xx

I think it can take time to decide treatment plan because of all the different tests but I completely understand u being concerned.  Could you e-mail the breast nurse and explain your concerns and ask them to look into it for you?  I don’t know what they mean when they say reconstruction won’t look normal. I had mastectomy with immediate reconstruction using fat from my tummy (it’s called DIEP). The reconstruction aspect and different options will be discussed with you with the plastic surgeon. Also measuring with a tape measure doesn’t sound very accurate. The ultrasound will be a more accurate figure so I’m sure it hasn’t grown that much. Hopefully an appointment will be made for you to c your consultant on their return from holiday but I would definitely e-mail the breast nurse expressing your concerns and asking them to help or advise you of who to contact.I really hope you get some answers soon.xx

Hello

I'm totally wired from steroids at 15 to 5 lol and came across your post.

Honestly i dont know much about your situation and i don't love giving out medical advice because i obviously have any idea if its right but i just wanted to let you know that the couple of weeks pre my diagnosis i measured my lump with a ruler ( very medically sound). It looked and measured big, much panic ensued.

After all scans it turned out to be much smaller because as i now know your mass can get all bits of tissue and fat round it. So whilst im no medical expert or even that well read unless your surgeon has x ray vision, im gonna say the tape measure is not reliable wether it was good or bad news so don't read too much into that now.

Besides that, this bit is awful and total s*** tbh. Its boring to say and i know you probably want someone to say it's all going to be fine ( thats what i wanted) but the uncertaintity is by far the spookiest bit and sadly no one will be able to alieviate your feelings becauae most of our feelings at this point are based on fear

Do try speaking to your nurse just to get some clarity on next steps at least. And do try and give yourself a break from cancer world, you've got to be kind to yourself now. Also one last thing my GP was actually amazing and helped me with coping options in my mass hysteria phase ( which still exists but  better at managing it), all that after years of slagging off their appointment making system haha

Xx

Thanks for the reply, I’m now wide awake again too! I wasn’t happy about him measuring like that, he said he wanted to as he hadn’t seen me before and he’s obviously standing in for my consultant. I said to him everything that you’re measuring might not be as you think seeing as the lump was initially caused by an injury, they wont know how much of it is fat necrosis.

I think I will try and get a GP appointment this morning as nobody is being very helpful, I don’t actually know if I will manage to get one of the MacMillan team for a nurse as they have never been able to attend any of my appointments it’s only ever been me and the dr or consultant. I am really only a number to them as I suppose they see a lot in one day so although it’s important to me they have more to deal with. 

At least if I see my GP they may give me something to help me sleep, this is a bonkers time of the morning to be awake haha!

Thanks for replying, I just feel like I’ve basically been told hi you have cancer off you go and do some more tests you will hear more in the post. When I ask the dr things they don’t know and say speak to MacMillan and then I ask them things and they say they can’t tell me I need to speak to my consultant, it’s all not very organised or smooth at all and I feel left alone with it. 

I hope you managed to get back to sleep! I think I’m awake for the day now

• Oh bless you, tbh my nurses aren't always the most responsive, they're lovely ppl but i don't feel like i can have a deep and meaningful about my treatment and actually i've never rang Macmillan so can't comment on them but Breast Cancer Now, have been a lifeline for me and have talked through every step with me ( i realise i sound chill but im not!) their lines are manned by former breast cancer clinic nurses so they've helped me with so many things from looking after my seroma to helping me talk through my choice on chemo. They obviously don't have your specific medical records but im sure they could tell you if your situation is normal and who to contact if it is indeed actually not  and you need outside support. 

Defo defo call your gp, i'm not afraid to say ive had the lot off them to help, it just stabalised my feelings and just helped me cope a tad more. 

I did get back to sleep for a total of 40 mimutes i actually have my first chemo today.... which i won't lie was also an agonising choice but a choice none the less ( basically given the choice which is its own stress in itself) so im trying not to stay positive with that choice

Please please call the dr

Xx

Ps im 38 and i do feel it helps to hear that ppl a similar age are going through it too