Well done on the "box tick", Bee. 👏 🤗
Yeh, that must have been very tough for you to do. Not just on telling your parents, but the physicality of the 2hr journey on top of your scan appointments (more prodding, so to speak).
So guess it's now the wait till 26th. Try and keep yourself distracted with cheerful, uplifting or mind absorbing things if you can, plus the company of good and cheering friends.
Lotsa love to you and everyone, Dellywellydingdong xX ❤️ Xx
Evening everyone, I’ve just returned home after dropping the bombshell to my family.
I drive down to where they live yesterday after my ct and mri scans.
That was the hardest thing I’ve ever had to do. But I guess a weight has now been lifted off my shoulders. Will take a while for the news to sink in I think for them.
Another tick in a box for this crappy rollercoaster ride.
have a good weekend everyone. X
Hi again Bee
My apologies in advance, for a mammothly looong post.
As Annie v quite rightly said, and most other ladies on this wonderful Forum say the same too - It really DOES help your currently reeling head, and other things, a great deal, once you have all your results, know more about what type etc., and have your treatment plan in place. It at least gives you some FOCUS to work towards and through, whereas you are currently in “limbo land”.
No-one "expects" it Bee. Why would we? Especially when we'd taken good care of ourselves with reg exercise, healthy food, moderated alcohol etc, etc.. Thought we were healthy. But it seems, and we hear about, even the healthiest and ultra-fit of people can develop cancer. So it isn't necessarily through any fault of our own. Maybe due to some other genetic predisposition other than the known familial BC gene, that is yet "unknown"?? Stress can play a big factor though. I'm sure that's what it was with me.
I could understand you not wishing to put a dampener on a family wedding, Bee. Have you "decided" to definitely go down to your parent's this weekend. I think it'd be a good thing for you to. That’s if you physically feel up to it after your day of more appointments. You begin to feel like a piece of meat, with all the prodding, poking, scanning that goes on!!
Nobody wants their loved ones to worry, especially when they are a distance away, and may be getting on in years, perhaps also with health problems of their own to contend with. But another aspect is - your parents will also need a while to get THEIR heads around it too, so from that perspective - the sooner the better, do you think? Rather than keep holding off until you're further along in diagnosis. Because, on the other side of worrying, will be the desire to “support” you and be there for you as much a possible with it all. Again, all that much more difficult to do when you’re living a distance away from.
I was fortunate in that respect. I was on my own, and had had to give up my profession, sell my business/practice which was in my home, so had to sell that with it too. Due to occupational health problems, not the BC. So I’d moved into my Mums, temporarily, until I found my feet again, so to speak. Away from all my friends and lifestyle, but nearer to her to be on hand for her two knee ops, and a few other family members, aunts, uncles, cousins, who I wasn’t particularly close to, having lived away from many years.
I didn’t tell her I’d found a small lump (or Joss the friendly Labrador may have “sensed”!), as she was just about to go away on holiday, and I’d thought (hoped) it may just be a cyst and nothing to worry about. But sensibly thought to better have it checked. Booked an appointment with a lovely female GP, which fell whilst Mum was still away. GP was VERY concerned on examination, as it displayed common signs of being more serious – very hard and very mobile. Her being “hot on it”, picking up the phone there and then (!!) to request a speedy referral to the Breast Unit for further exam, investigation and mammogram, obviously got me worried!! I still didn’t mention about it all, when Mum called me to say, “Hi”, “We’re all having a lovely time”, and a general, “Are you okay”? Just wanted her to have a good time.
She came with me to my 1st appntmnt for exam, Mammogram and initial needle biopsy. From which I had a later core biopsy apptmnt. And was then most fortunately with me at my result appointment, when the nasty news was delivered, as I literally slid off my chair and onto my knees!!! Cuddled me like a baby when we got home, repeatedly saying “We can get you through this”. A total rock. Bless her cotton gusset!
And everyone else, family, friends and neighbours, were all so very supportive and kind too. It’s no use thinking and being independent at times like this, flower. You really do need all the support and help you can get!!
Lotsa love to you and everyone else on here, Dellywelly xxXxx
I'm splitting my post up. I'm a bit known on the Forum for looong posts. Sorry in advance to you and everyone.
Hope you go on okay with your scans today. Am still not understanding/know what was found from your initial biopsy, that's lead to bone scan and todays CT and MRI? You didn't say, except that it was Graded 3 and it's being tested for HER2. Was it perhaps due to the "area/part" of breast tissue that it is situated in, that has meant they're carrying out these further tests??
I know people often say "Don't Google", but there's much "helpful" information out there to access, as well. Personally, I think it better to be as informed as possible. For example - You said you don't know what HER2 is all about. Perhaps you were already told, but didn't take it in. Sooo understandable, as It's all such a HUGE SHOCK initially. You are literally reeling, your head's all over the place, so doesn't always take everything in. Hence me say, if you can, have someone with you. Especially at result and treatment plan appointments. Otherwise, if the medics/BCN don't give you leaflets with the information on, always contact your BCN if there's anything you don't understand, or wish to know more about. Never be afraid to ask questions, even if it's later, after an appointment, because they understand only too well, you won't always take everything in with the upset of it. So don't EVER feel you're being a nuisance or a bit dumbo'ish. This is very serious stuff, and it's your body, health and life you need to know and think about.
Louby Lou has already very thoughtfully and kindly given you some HER2 info, but when you have time, have a read ref HER2 from direct medical sources as well. xXx
https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/her2 and https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/receptors-for-breast-cance...
Some cancers are stimulated by hormones. They are referred to by ER (oestrogen ) PR (progesterone) and HER2 is a protein that sticks to the cancer cells. If your cancer is hormone positive then you’re often offered hormone suppressing drugs (Tamoxifen is one drug) you have to take them for 5-10 years to block the cancer and stop it from reaccuring.
If you don’t have hormone related cancer it’s called triple negative.
I think some women can be positive for HER2 and negative for the other 2.
Im triple positive so my cancer is fuelled by my hormones. It also means your treatment may be different.
Hi again Bee,
I'm still not understanding why you've had to have a bone scan, then CT and MRI ?? ANC = full Auxillary lymph Node Clearance. SNB = Sentinel Node Biopsy testing.
I'll pop on again, as I'm just off to bed. Hope you manage a decent sleep tonight xXx
was great to read your journey that started in 2006! And see some positives. I want to know more!!!!
I’m not hot on all the abbreviations yet, ANC SNB.
So here’s me so far…..
I just wasn’t ready to tell me family after the wedding. It had only been 4 days after the initial results. I’m very independent and needed to get my head around the shock.
I don’t know the type of cancer. I know it’s grade 3. Which I guess is the crappiest.
I had my bone scan yesterday. Ct and mri tomorrow.
I need a second biopsy on some calcified areas, worried about this being another problem.
Big results and treatment plan on 26th.
im thinking to head back down to my family after my scans tomorrow and dropping the bombshell. Stay overnight and then head home the next day.
The breast pain since the first biopsies has got a lot worse. My nurse has assured me this is to be expected but I’m worrying myself sick.
She also suggested getting a very supportive bra. Any suggestions are welcome, I’m a size 32g and always struggling to find something comfy, feel like I need a 33 size
I’m having dreams in the night and waking up very confused as to what’s real and what’s a dream.
I even woke up with a sore ear the other night and convinced myself it had spread to my ear. Every little pain I’m thinking the worse!
I know my first biopsy is being tested for HIR2RECEPTOR but I’m not sure what this means.
Not sure if I’m doing the right thing, but im
not Googling anything.
I’ve not asked or been told anything about lifespan now I have this bloody thing!! Is that normal?
feel free to drop me a message if you want or chat on here
thank you for sharing to story xx
Hi Bee and girls
Did you tell your parents before you left?? If so, how did it go?? Or have you still not??
What were the results of your biopsy, Bee, as you're having bone and other scans?? I don't think you told us??
I'm an old timer - 2006 (at 46) and 2007. Mastectomies and full ANC's, which was standard procedure with mastectomy back then, as it was prior to SNB being launched. 2nd one was a different type of primary, so UNrelated to the 1st. 1st was Grade 3. ALL caught very early so no chemo required - surgery sorted it. Don't think about BC much now. Took until 5 yr check up mind, until I began not to and relax. Am just mentioning all this, because you don't see or think you EVER WILL, in the beginnings with it all. But you do settle with it eventually.
Anniev - Don't beat yourself up about not having regularly checked. I found mine because my shower sponge had disintegrated, so I was using my hands to soap myself down, instead. Otherwise I doubt I'd have found it so early. That was also after a neighbours lovely Lab kept nudging at my underarm on that side. Didn't mean anything at the time, until I found the lump on that same side a week later.
If you can, always have someone else with you at appointments, especially result ones, as a second set of ears, even take notes for you. Your head's all over the place, so it's easy to miss all the info you're being told.
After all your treatments are over, and getting more back to normal, try not to think "What ifs" and it stop you/rule your life. Better, healthier and more productive to think "What if NOTs". But.... stay/always be "vigilant but NOT Paranoid" about anything else bodily that may crop up.
Hope your scan results are favourable ones for you, lovey. Keep us informed what's going on/happening/how you are doing, if and when you're up to it.
Good Luck to you and everyone else. Speedy Healing wishes and love to you all, Delly xXx
@Teagold its just absolute rubbish being on this journey, isn’t it.
I’m trying to be positive but as you say the uncertainty is so very hard to deal with.
ive decided to get a weekly planner pad thingy to try and deal with each week one at a time.
just had my bone scan today. More scans on Friday.
I’ll drop you a message if you don’t mind. No hurry to reply or even at all.
Aw @bee1234 - sounds like such a difficult day for you. You’re so brave. There’s no way I’d have been able to go to a family event a few days after getting my initial diagnosis. Well done for getting through that. I really hope that when you do tell your family you get all the love and support you need from them.
I can completely appreciate how you must feel having just fallen in love and wanting to make future plans. I felt like my entire future had disappeared and couldn’t get out of my head that I wasn’t going to be around for my husband and kids. I still have a lot of uncertainty and anxiety if I think too far into the future which is why I’m trying hard to be a bit more “in the moment” - it goes against a lot of my natural instincts so it’s hard but the good days are all the sweeter when they come, and there have been good days even throughout treatment. Take it easy on yourself and be a bit selfish if you can - of course we don’t want people to worry about us but they’re going to anyway so if there’s something they can do to make this easier on you, take it. The most important thing now is how you feel and getting through your treatment. I’m happy to answer any questions you have about treatment either on this thread or in the private inbox (little envelope at top of screen).
@Teagold @Thank you for you detailed response. I was at a family wedding yesterday, that’s why I’m visiting and staying with my parents at the moment. Yesterday was very difficult, found myself wanting to get pictures with everyone, thinking I may never get to do these things. Three family members have cancer and hearing then comets other people were making about them and how well they are looking. Was all quite a lot to deal with.
I just found out 5 days ago. And just feel I can’t tell my family yet. Not really sure why. I know there isn’t going to be a good time. I did think about chatting with my brother but there hasn’t been an opportunity to see him alone. I am heading home tomorrow so times is running out. But maybe that’s ok.
like you this shocker was totally unexpected, foolishly I thought I was just feeling something that wasn’t even there. I don’t feel unwell, tired but I have a very active job.
I’ve just fallen madly in love with someone and we have been making some many palms for your future. And now I'm not sure if we have a future to look forward to.
I’m also a planner and really struggling with the what ifs and we don’t know yets.
I have done some reading but just feel im only looking at the negative side and making myself scared.
I’d be interested in how you coped with the treatment. Not sure if you would be happy to fill me in a little, if so on here or is there a private messaging thingy???
Reading your message was a reassurance that how I’m feeling is to be expected. Just feel completely shocked and scared and unclear if I have a future to think about.
thought the saying was ‘life begins at 40’. So far this a shit start!!
Hope you don’t mind me jumping into this thread. I was diagnosed exactly six months ago - in my case it was stage 3 grade 3 TNBC with lymph node involvement, I went straight from being somebody who considered myself fit and healthy (non smoker, lots of exercise, ok yes the odd glass of wine - or three - but generally looking after myself) to having aggressive breast cancer, felt like it came out of nowhere, like being in a nightmare. I kept waiting to wake up. Like you, one of my very first thoughts was how the hell do I tell my parents, they’re in their 70s with health worries of their own and I should be looking after them not the other way round. I’m very lucky to have an older brother who also lives nearby so I phoned on my way home from the doctor, still reeling from my initial diagnosis, dumped the news on him and he offered to tell them the next day. I still shudder to think how awful it must have been for the three of them that day, him having to break the news and them having to hear it. Half an hour later they were all in the car coming over to see me, we got through that morning and from then on it’s been one step at a time but they’ve all been phenomenal in supporting me. I just wanted to share that because I think there is no “right” way to do this, whatever instinct you have as to how to break the news is the best thing to do, and once you’re past that point hopefully you will then get all the love and support you need from your family which I promise makes all the difference.
There is so much on this thread that resonates - how you feel, what other people say etc, worrying about every twinge you now feel etc. As other ladies have said, once you have a clear diagnosis and treatment plan things change. People said that to me in the first few days and I didn’t believe it, but it was true. Once I knew what I needed to do, it was “head down let’s get on with it”. Here we are six months later, I’ve done chemo and just had surgery, it hasn’t been my best six months ever but it also hasn’t been as horrific as I feared it would be. The words “manageable” and “doable” are very accurate, I think. I also agree that the only way through it is one step at a time. I’ve found that challenging as normally somebody who likes to plan ahead, like really far ahead, but I’ve got better at not thinking too far ahead and just dealing with what’s immediately in front of me.
Anyway all I really wanted to say was that reading your post reminded me so much of how I felt six months ago and wanted to send you a big big virtual hug. Hopefully your other tests and treatment plan will put your mind at rest that there is a clear path ahead, maybe not the path any of us wanted, but there is a way through this. Please feel free to ask any questions at any point. The ladies in this forum are phenomenal and have kept me sane.
@AnnieV @Oh wow such good news about the margins and no more surgery. Congratulations!!
you have reassured my a little about how the Biopsies feel afterwards. Just feels so much worse since.
feel maybe after the wedding I might set the seed that I’ve found a lump and going to have some tests. Then tell them the full sort once I know more……I don’t know
i very much appreciate all
you have told me, feel like I have pestered you a little. But thank you xx
Do you think it likely your parents will suspect something is up? Perhaps you will find an opportunity in the couple of days after the family wedding is over. It's a really tough call. Maybe you will want to wait until you know more yourself after the scans.
Yes after the biopsy I was really uncomfortable and the lump felt more obvious. I think feeling uncomfortable after the biopsy is really common. (It felt like I was under attack when I had it done)! I was so bruised and swollen and the bruising took longer than 2 weeks to subside. In fact that boob did not look quite right even at the point of surgery.
I had a call from my consultant today and my cancer has been regraded from grade 1 to grade 2 and that has thrown the original treatment plan into question. Chemo is now a possibility but another test on the tumour is needed; so another 2 to 3 week wait. On the upside the surgery is over with (clear margins taken with the tumour, no lymphovascular invasion and clear lymph nodes). It's just such a harrowing time. You are trying to take everything in that the consultant is saying, learning a whole new language and then you have the onslaught of emotions. Then you have to face updating people. (The more people you tell, the more you have to update and that can be really draining in itself).
It's really normal to feel scared about every twinge. I worry about what else could be going on I don't know about, given it could have been so easy to stay oblivious to the lump I found by chance. I thought I was healthy up to that point and now I doubt everything, like I don't know my own body. As a result I think it is perfectly ok to raise any doubts or niggles you have with the breast care nurse that has hopefully been assigned to you? I found also that it has helped me to take control of the things I can; like improving my diet (not that it was terrible), quitting alcohol, more exercise and finding a creative outlet to vent my feelings. (I wrote a couple of poems since diagnosis; it's also a handy way to update people with how you are). People often say 'be positive' (which is well meant but kind of vague) but I think being proactive is one way to try to 'be positive'.
Wishing you all the best for your scans next week. Big hug to you xx
@cath20 @No time is the right time I guess. I’m with them now visiting for a wedding tomorrow. Else I won’t see them until, supposedly, a family holiday to France end of august.
I don’t know what to do
I really appreciate you explaining your journey so far, it helps.
I have ct, bone scan and mri next week. I terrified about the results.
I have like I’m making myself feel things or wondering if every ache or deep breath is something to worry about. I feel so scared.
I don’t feel unwell and like you just felt a lump randomly while laying in bed. So this is all a big shock.
Since having my biopsy, the whole breast so much more painful, which is making me worried. Were you painful after the biopsy?
I’m with my parents now visiting for a family wedding tomorrow. Then staying a couple of days after that.
After being with them today, I just don’t know how I can say it 😔. X
So sorry to hear of your diagnosis.
I was diagnosed during lockdown so I couldn't physically visit my Mum to tell for a few weeks. My partner said I should ring and tell her ASAP, but I felt in my gut that I should wait to tell her face to face - which is what I did. She told me afterward she was glad we were together when I told her. We were able to hug and have a cry together. And she also said she was able to see that I was ok, which gave her strength.
As @AnnieV said. There is no right answer. You know your family best, so I would say to go with what you feel would be best for you and for them.
I beat myself up a bit about the fact I found my lump by accident & hadn’t been routinely checking. It just wasn’t on the radar & yet I am sort of person that will attend dentist, have smear test etc when supposed to.
I found lump in mid May & dismissed it for a week thinking it’s nothing to worry about, most likely. Just to be sure I went to GP & then world fell apart. Two weeks after that (9 June) I had the screening tests and after another long two weeks & two days I got the results. I had wide local excision surgery to remove lump and a sentinel node biopsy on 19 July. My nodes were found to be clear but I am waiting for full results of surgery, but next appointment isn’t until 25 Aug. I am hoping no further surgery will be necessary & believe I will have radiotherapy followed by 5 years of tamoxifen (according to the plan anyway).
Don’t be afraid to ask anything on here; it is a very welcoming forum & we all “get it” xx big hug to you xx
We are fairly close in age. It’s not something I was expecting at all, stupidly.
yeah emotions are tears tonight.
when and how far a long are you in this crazy breast cancer rollercoaster? If you don’t mind me asking xx
Yes, it definitely feels like a lonely place to be in. I think when you are younger as well (I’m 45 yrs) it seems like breast cancer would be the last thing any of your peers have to think about & they are all carrying on with ‘normal life’. Be ready for the range of emotions - they are all valid; it’s a bit like grief. Once you have been talked through a treatment plan, it will likely help a lot, as you feel a bit more in control again xx
I’m sorry to hear of your mum passing and then for you to have this news.
I don’t want them to worry about me. I’m quite independent and live on my own. I’m worried that my mum will want to move in etc.
at this stage in scared. Just having the treatment plan will help.
thank you for replying. It can seem a scary place on your own. X
I don’t think there is one right answer to when you tell your parents (or anyone). You are still trying to get your head round it all yourself. For me, I let my dad know by phone, as soon as the GP referred me for tests. I lost my mum last year to a different cancer so there was never going to be a good time to tell family, so I just didn’t delay & for me it helped getting their emotional support from the start. I am sorry you find yourself on this journey. I hope you will be given a treatment plan soon xx
Hi, I was just given my first biopsy results yesterday, Monday. I live a couple of hours away from my family. How and when do you tell parents??
Im 39. They don’t know anything. Not even that I found a lump. I am travelling to see them in the next few days for an family event.
How and when do you say these things?