I found a lump

[aodirjjd]

Sorry you probably get hundreds of these on the board. I’m only 35 and found a breast lump when showering today. I’m shit scared and just really worried that I won’t get seen quickly because the nhs is such a mess right now. I’m going to call gp in morning and beg for an appt.

do all lumps get referred to breast clinic or is there chance doctor will poke it and say it’s not needed ? Are people still actually seen in two weeks if a referral is needed ? I’ve spent all evening googling private breast scans trying to get an idea of costs because I can’t bear the idea of waiting weeks for a referral that is delayed or some other drama like lost test results. Has anyone done this? It seems initial appt is £250 which I could afford but I wasn’t sure how much biopsy’s etc might run too. If I’m seen with nhs do I have to wait ages for any results or can they give me all clear quite quickly from breast clinics?

I’ve got a holiday in 6 week that I’m desperate to go on as well. I know logically this lump is almost definitely nothing and I’m really upset that if I don’t get seen quickly I might struggle to get travel insurance.

I had some good news today. Nothing all in lymph nodes and tumour was still small once they analysed it (less than 2cm). Surgeon said I can consider myself cancer free which is great although it feels like a contradiction because I am still being referred to oncology for further treatment (probably chemo). But the win here is no more surgery and only stage 1 cancer. I’ve also healed very well from masectomy and am literally up and running again.

there is a bit of a waiting list for chemo so basically I can now focus on enjoying my summer and will start chemo (if oncology decide I need it which they might not but probably will) in about 6 weeks time. Everything has felt so up and down but I am trying to focus on today as a win.

That really is the best possible news 💐 absolutely a win!

@aodirjjd wonderful news! 🥰

That's great news op, I'm sure you're very happy

Brilliant news! Try and enjoy the rest of the summer if you can

What a lovely update, OP!! I'm really pleased for you 😁Hope you can now focus on enjoying the summer and that the whole experience hasn't been too traumatic.

That’s good news Op. Hope you can relax a bit now although I know it’s never far from your mind. I’m recovering from a lumpectomy and taking strength from the people on these threads.

I’ve oddly being struggling since I had the news. I can’t quite put my finger on why. Maybe it’s because I’ve been so worried/focused on the potential next step that now that I can breath I’m now able to process what I’ve been through so far and think about the long term implications a bit more. I’ve felt quite depressed these last couple of days. I am trying to do right things like exercise and talk to people. I will push through and I will do. It just feels very hard.

I’m also a bit gutted to join another uncertain waiting list. I wish I just had an appt ages away rather than just waiting on a phonecall in a few weeks time.

That is fantastic news ! Now enjoy your summer , you must feel very relieved x

It’s been a rollercoaster for you with huge uncertainty and now after wondering what you’ve been potentially facing the initial adrenaline of good news has passed and you’ve crashed .. I think that’s normal especially as you still feel u sure as to what to expect in the future and when . Try to just focus on the present if you can (I know it’s easier said than done especially when I’m terrible for always expecting the worst ) xx

I’ve had the follow up letter from that appt just now. I don’t know if I’m misunderstanding it but it reads to me that I DO have cancer in the lymph nodes. I’m so upset that I’ve got this letter on 6pm on a Friday so I can’t call breast nurse to ask until Monday.

@aodirjjd what doesn’t say? Is there no one at all at the hospital you can speak to?

I only have a number for cancer nurse who only works 9-4 weekdays the voicemail gives me a number but it’s for people who have issues with their wounds.

My letter says:

“ER 8, HER2 negative, lymph node negative, 2 lymph nodes - 1 negative, 1 micrometastasis 1.9 mm”

I had to search for what micrometastasis was but it’s apparently cancer cells that are to small to count as a tumour.

they were really clear in the appt that I had nothing in lymph nodes but now I’m wondering if he just meant no “tumour” but micrometawharsit becomes a tumour when it hits 2mm so pretty damn close!

During the op they would have removed that lymph node though? Sucks that they weren't clear. Very irresponsible of them!!

Could they be referring to the lump that they found in your breast and the letter just isn’t worded very well? Is there be someone at Macmillan or Breast Cancer Now you could ask tomorrow?

@aodirjjd have you spoken to the nurse?

I did yesterday. It was a different nurse to the one who was in appt. She confirmed I did have cancer in the lymph nodes and said surgeon should have made that clear. I spent the whole weekend wracking by brains as to how I got it so wrong. I know he definitely didn’t tell me I did. I think what he must have meant is that there was no cancer in my lymph nodes post surgery and I’ve just heard no cancer in lymph nodes and skipped out happy. But he definitely didn’t tell they found that during op or I would have asked how big etc. I cried all night Friday. I am just sick of thinking I understand a situation to have rug pulled from under me again. I know people sometimes don’t process information well when they are upset but I am SO sure he didn’t tell I had cancer in lymph nodes. I’ve had of communication isssues with him throughout this awful process but this is really cherry on top.

there was also an NPI number on there. It gives 5 year survival rate and it wasn’t great. I can’t believe they just gave me that number without warning me or explaining the context. And then the cheek of the letter to say “I gave you your histology results as above” when there is that plus lymph node result and a load of terminology I had to google and learn myself.

Next steps with oncology don’t involve that surgeon so I am just trying to forget about him for now. The cancer in lymph nodes was small enough it doesn’t ultimately change treatment plan, it just swings the for and against chemo decision much more strongly to for and makes my odds of it coming back a lot shitter.

the nurse also told me that when oncology call they are likely to say “your appt is tomorrow” and could be anytime from next week till mid September. Apparently it’s been that way since Covid. So I basically can’t plan anything that would be painful to cancel and will jump every time my phone rings for potentially the next 6 weeks. I can’t stand this waiting in limbo.

I am coping but last weekend felt very dark.

Oh @aodirjjd I'm so sorry you've been through that with no warning. That is so irresponsible of them. And I can't believe they can call you and make you start chemo with no notice whatsoever!!

I'm guessing they will likely phone between Monday to Thursday, so if I were you I would book stuff you need energy for on Fridays and keep your weekends busy.

I hope the rest of your treatment isn't too awful. Wishing you all the best and hope you'll be giving us a nice update in a few months to say this dark chapter is behind you. All the best xxx

I am swinging between being able to enjoy my summer and climbing the walls.

I went swimming yesterday which is really good for me mental health wise. I had tried to buy a special masectomy swimming costume but the one I got was a bit shit and didn’t fit so I sent it back and just wore my old “normal” one. I was quite proud of myself for just turning off that self conscious part of my brain and saying sod it I’ll just be lopsided! Probably helps that I am small breasted so it’s less obvious than it would be for some women.

my partner is working today/tomorrow and needed the car so I’m a bit stuck this weekend. I’ve got almost a guilty feeling like I should be outdoors making use of the summer while I can. I’d like to be out doing long walks but a bit tricky without transport.

I’ve got things I can do though. I just wish they would hurry up and call . It’s only been two weeks so potentially two more. I’m also waiting on the genetic test results which is now 10 weeks and counting. In that first appt they said the results would be 6-12 weeks but since then they keep saying an average of 12 weeks.

Hi @aodirjjd how have you been? Hope all is well with you and that if you had to have chemo, that it's going well and almost done by now. Sending love and good wishes xx

Thank you for asking /thinking of me.

I’ve done 2 (nearly 3) sessions of chemo out of 6 hoping to finish in December.

it’s been quite a rough time in some ways but I’m coping quite well. I’ve not had to bad side effects so far , just mostly mega tired.

after the chemo i will be on long term hormone treatment which is a bit scary as it has serious implications around osteoporosis and energy levels but I’m just trying to take each day as it comes.

Lovely to hear from you! I'm sorry it's been a tough time and that you're going through chemo. You sound really brave and I hope you can feel proud of yourself and how you're moving forward with the shitty hand life handed out.

Will keep my fingers crossed for you that your last 4 sessions aren't too bad and that December comes quickly. Really hope the hormone treatment is okay too! All the best xxx

I came on here wondering how you were doing … good to see the chemo is doable for you at the moment and finishing by Christmas is great timing !
Try not to think too far ahead about the hormone treatment, have they offered you biophosphonates? (Bone strengthening meds )

I had my mastectomy two weeks ago and I’ll be joining you in the chemo train as my cancer is HER2+ plus I’ll need Herceptin for a year ..
you’re going the right thing taking it a day at a time x

Thank you. I’ve not started on the biophosphpnates but they are on the table. They apparently have positive cancer effects as well as bone strengthening so I am very keen to have them. I’m going to start all in a month if I feel up to it alongside chemo.

In regards to the long term, I have just found it particularly difficult to come to terms with because I have previously had very poor mental health growing up and into my early 20’s. The antidote to this and the maintenance to stay mentally healthy is exercise. I am worried what it will be like if my long day hikes and 10k runs turn into little walks around the block. I can deal with it temporarily but if it becomes my life I will struggle. And I don’t think most people understand that, They think once chemo is done I’ll bounce back to exactly how I was with a bit of effort and patience.

I have felt quite isolated and alone with that, and people have encouraged me to connect with other young people in my situation so I have found some support groups but it’s hard because all I see is people who are further down the path than me really struggling with things I am already afraid of so I don’t know how helpful it is!

I also learnt that I have a defective gene that makes me more likely to have breast, ovarian and pancreatic cancer. It’s not as “bad” as the BRAC gene and I am still waiting for my appt to discuss the results (that’s a whole nother nhs stress story) so I want another mastectomy. I don’t yet know if the nhs will support that or if I need to prep for battle. I am desperate to talk to someone about my reconstruction options as well so I can start to make a decision. I feel like if I only get all the info at decision time that doesn’t give me chance to think it through.

My final whine is that it feels like my breast cancer nurse has completely dropped me, I’ve not spoken to her since August. I presume she’s on sick as I’ve had two calls from a different one who can’t help with organising getting me a prosthetic breast because she’s not “my nurse” which is annoying as I’m still using a softie I got after surgery but more than that she’s just useless. Maybe she’s new to the job but It’s like she’s reading from a script and doesn’t see a person. She’s asked me on both calls if my masectomy wound has healed and it’s like I should bloody hope given the surgeon signed me off for chemo months ago! She also suggested I “wait and see” regarding severe acid reflux after chemo and I felt like a right twonk when I called chemo helpline 4 days later in tears and it was solved instantly with a supportive med. I could have been pain free and eating better much quicker. I’ve not called her since that call which was about a month ago but I need to really to get a prosthetic breast so I can start to see if I can live with that or want reconstructive surgery later so I need to do it.

Do you know what your chemo regime is yet? I’m 3 weeks into weekly taxol, what I can say about exercise is that I’ve managed to keep up my rigorous regime so far without any problem, and I think it’s helping me both physically and mentally, I’m prepared I’ll slow down at some point but I’m going to fight it as long as I can.
theres a Facebook page called breast cancer and fitness I’ve found quite helpful with this.
good luck, it’s all a lot to take in and work through x