Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Its very easy to start that thinking but best to stop it if you can. I am much better now 2 years out but even I after having a year of everything going well then had my DIEP cancelled on 6th put back to 13th cancelled again and I for a couple of days went down the its going to be bad news route and my DD isn't going to have got into her first choice uni on 15th and then my new job will fall through. That kind of thinking does you no good, luckily on 15th my DD did get her first choice uni and the checks for new job are almost complete and all fine so far. They've just used the phrase when you arrive to me. I would be incredibly surprised if your bleeding is anything sinister.

The best technique for me is distraction and keeping busy so 13th and 14th was frantically messaging hospital to get this resolved, 15th was sorting endo part at hospital and DD into uni. From then I have kept busy, gardening, afternoon tea with DH in garden, going to Chatsworth yesterday and thinking much more positively. At your stage I found for me the best strategy was denial, cancer what cancer. But find what technique works for you, I found it useful to think about when I felt better and when I felt worse. Exercise - 20 mins a day - or whatever you can manage - does help physically and mentally and that can be a walk, a swim, a jog, gardening though don't worry if you can't manage that, just be kind to yourself. I watched lots of Below Deck and trash TV. I found taking it day by day helped and not thinking longer term and also only tell people if you think it will be helpful to you. Projects round the house can be good to do as distraction. I found the odd day out c once a month during treatment really helped - many of mine were puffin related but anything really you enjoy.

My nodes were not biopsied as clear on ultrasound, MRI and mammo. However in surgery they generally do a sentinel node biopsy taking out 3 nodes for sampling - in mine one was cancerous so then they did another op with full node clearance that side. No further cancer found.

@Penguinsa penguinsa thank you so much.
I think I will print out your advice. I really need to follow it.
I think that part of the problem is that I've decided to get some work done today (at home). I'm finding it impossible to concentrate (as you can tell from the fact that I am basically on mumsnet every hour etc). I will just try to finish this one task and then admit defeat for now, have lunch and maybe go for a swim in the afternoon. Work have told me to take time off, but it seems weird to me as I am not physically feeling ill - and of course most people don't know I am officially off work so the emails keep coming in...

I think swimming would be an excellent idea, love swimming though at the moment pools can have a lot of children in them. Hope you can find a resolution for work, maybe agree something with your manager you can put on e-mails like you are on leave until x date.

They will biopsy your lymph nodes if they feel lumpy or if they see them looking thicker on ultrasound/mri/mammogram. They biopsied one of mine and it came back as nothing so biopsy doesn’t mean definite (or they wouldn’t need to biopsy!).
they also remove one more more when you have surgery to remove the tumour. They will then check to see if there’s anything there at a microscopic level.

also if the biopsy shows there IS cancer in lymph nodes that can trigger more tests treatment decisions or removal of more lymph nodes.

Thank you so much @Penguinsa and @aodirjjd . You are incredibly kind to have helped some random woman on the internet! I do feel a lot calmer.

@drivinmecrazy i hope you get some answers, a plan for next steps and good support today.

I’ve realised that it’s 12 weeks today since I got the recall letter after the mammogram. In that time my dad has died and we’ve had the funeral - he suddenly went downhill a couple of days after my first op. He didn’t know about it, thank goodness.

Results from latest op and Oncotype testing due tomorrow - I am catastrophising all over the place and trying to keep distracted and as calm as possible.

@breastcancerpanic you are among friends. Most of us found this thread early on when frantically trying to make sense of the strange and frightening world we have fallen into. It is okay to download all you worries here. We won’t laugh but we will reassure you that things improve once you have a treatment plan. Don’t be afraid of tests because knowledge is power.
Some of us have been on here a long time and helping newcomers to the thread to find comfort is part of paying back the help we received. In a very short time you will be doing the same xx

Bit of an update regarding yesterday's appointment.

I can't recall what type of cancer I have because TBH it all went in one ear and out the other, but thankfully my BC nurse is ringing me tomorrow for a debrief.

However, it seems it's quite a treatable one.
So the current plan is a lumpectomy on about 22 September followed by radiotherapy.

My lymph nodes are showing clear but there's still 'an are of concern' close by.

I have an MRI on Friday and a follow up with consultant on the 2nd so not long to wait.

It's all still such a blur but I feel 100% better today than I have for weeks.

I know it's all starting out so optimistically, and thank to these threads, I know things might change in an instant.

I feel a little more in control today and feel more confident about telling people.

So many friends and my DM have known something hasn't been right recently but haven't felt able to talk about it because it was all so vague.

I'm relived now I can talk about it without bursting in to tears.

I actually feel incredibly calm.

Long may this continue, until the next bump in the road.

A huge thanks for this thread that takes some of the fear of the unknown away and a safe space to unload 🌷

Does anyone else have real issues with different messaging from doctors? A few weeks ago my surgeon told me my lymph nodes after surgery “were clear” which I took to mean no cancer found in the lymph nodes and then had a really nasty shock when I got a letter following up from that apt which mentioned a micrometatisis (small cancer) found in lymph node. I did call cancer nurse to ask but as it was a different one to the one in my appt although she very helpfully explained what the hisotology actually all meant I wasn’t really able to ask her how I got the wrong end of the stick so badly. I am really struggling to let go of this. I spent days desperately trying to remember his exact wording. I know he definitely didn’t tell me there was anything there or I would have asked for more detail so at best he meant clear as in they are now clear and you don’t need more surgery.

I similarly had an issue with that pathway where I spoke to one surgeon and agreed masectomy with reconstruction and then the week before surgery found out I’d been signed up for masectomy WITHOUT reconstruction. Surgeon explained why reconstruction before chemo was a bad idea so that was ok and i didn’t get reconstruction but I could have easily woken up expecting a fake boob and woken up flat.

I thought I’d left that sort of stuff behind when I switched from being surgeon lead at normal hospital to oncology lead at a cancer hospital but a week ago I had my “do you want chemo” discussion and they mentioned option of cold cap and said it was 50-80% effective so I said great sign me up and then yesterday I had an appt when the next doctor said to me it’s only 20% effective.She said she has no idea where the other doctors statistic came from. I have made peace that I’ll probably lose my hair but I just feel like I can’t trust anything anyone tells me at the moment. Almost like I might as well lie down and tell them to do whatever they think is best and don’t waste time telling me anything cause I clearly can’t make informed decisions for one reason or another.

is this typical? I am not someone who struggles to understand things in my day to day life! I am quite young for this process and I’m worried I’ll sign myself up for something that I don’t actually want because of long term effects.

I've only got one toe into this process as newly diagnosed but I can sympathise with your confusion and lack of communication.

Do you have a partner/friend who has been there for phone calls and consultations?

It's easy for us to hear only part of the conversation.

But your story is one that I fear for myself.

At the moment I just have one consultant/surgeon who I have no reason to distrust.

I'm sure it's not down to your misunderstanding more their miscommunication.

I don't know at what stage in your treatment you are, but you are scared and confused and that's not acceptable

Wanted to add, I'm so sorry you're going through this.
It was never a shit show I wanted to join.
Hopefully some veterans will be along later to give proper advice 🌷

I had witnesses for the reconstruction / no reconstruction conversations and so I know that wasn’t me but no witnesses for the lymph node confusion which is so fustrating because I feel like everyone thinks he probably explained it and I didn’t understand and it was the first appt I went to on my own!

the doctor who corrected the cold cap thing yesterday was present when the other doctor said 50-80% and she acknowledged that’s what the other doctor said and said she doesn’t know where that doctor got that figure from I know I wasn’t confused there.

I am relatively young for this , being only 35 and I am quite worried because my cancer is estrogen positive and I am being signed up for a lot of treatments that will reduce my estrogen levels and I am really concerned about long term implications of shutting estrogen down. I do not want to be 50 with osteoporosis and a dodgy heart for the sake of a 2% reduction chance in breast cancer recurrence. And how can I weigh up those risk decisions if I can’t even trust what I’m told about really basic facts?

Totally with you all on the messaging. Super anxious today as my wonderful surgeon/ consultant is on holiday and I'm awaiting the big news about whether I'll need chemo or "just radio" and other drugs. This will be delivered by a different consultant later today if the tests are back. I've previously had an appointment cancelled 2 hours beforehand as the tests weren't back. Keeping very busy indeed this morning.

One of my questions for the consult is "what else can I do to reduce the risk of secondary BC long-term?" I know exercise and cutting out alcohol are two factors. Glad to have the support of others here for hand holding and clarifying.

@drivinmecrazy glad to hear you have a plan for now at least but sorry you're in the same boat. I've had two lumpectomies now and gave myself a firm "it was no problem I could go through this again without worrying" when I came round from the first one. The second was to get clearer margins as the area was a bit bigger than suspected from the ultrasound. Hopefully I'll get good news on the histology from this today as much as it wasn't scary, I really don't want to go back for a third op as I'm beginning to feel reasonably back up to strength now.

Sorry I don’t want to dominat this thread but I’ve just had another awful example . I was waiting on test for genetics. They told me in my initial consent appt they were testing brac 1, brac 2 and palb genes. I’ve just had a call to say I tested positive for a DIFFERENT gene. I asked if I’d misunderstood on our initial consent call what they were testing and she said no she didn’t realise they’d test for that either. Feel a bit shocked yet again.

Well my news is shite. After two ops there is still cancer left so the best route is looking like mastectomy and reconstruction. They could try taking more tissue but that’s really kicking things down the line. The Oncotype testing is a definite for chemo, which they want to do once they have all the tissue analysed from my op.

Hope everyone else expecting results today has had better news.

@aodirjjd I’m sorry you’re not getting clear messaging. It does feel like every time we go back we get more and worse news but you’d hope that this builds on accurate information each time.

Just popping in to say that I am so glad that these threads are still active. When I was going through treatment a few years back I found the support and information I found on the threads active at that time invaluable. My very best wishes to all who are going through that now and I hope that you find the threads as supportive and helpful as I did.

Sorry @dancingwhilstfacingthemusic that's not what you wanted to hear. Take comfort in the fact they do seem to be moving along quickly with things for you. Its just pretty sh**y being in this position in the first place and @aodirjjd it won't be you. Its sad but I just honestly think there are so many people they see in a day and so many people they discuss at an MDT ..I think they forget what they've told you or what they think you already know! I always take someone with me now coz I am a bit like a rabbit in the headlights. In fairness the surgeon/consultant has always said "do you have any questions for me" but that's when I've just had complete overload.. I feel like saying..no ..but I will have tomorrow morning at 3am !!

Sorry it was tough news Dancing - I agree best to go with mastectomy. It is a tough treatment programme but just take it stage by stage and day by day and take any chance you get for a day out and it does end. If there's radio as well that's much easier.

*aodirjjd *Sympathies on messaging, have had issues myself - sometimes I think they make errors partly as so busy, communication between departments seems non-existent and sometimes I think there is very selective phrasing like the waiting list will be 1 year but not telling you they won't put you on that for a year and a half.

Driving Glad you have a plan.

I'm so sorry you had bad news @dancingwhilstfacingthemusic. It's really tough.

I'm six weeks out from a single mastectomy and chose not to have reconstruction but there are lots of amazing options if you do.

I am about to start chemo in the next week or two (minor ailments allowing) so we are on a very similar journey!

My cancer turned out to be lobular after surgery. I am so interested to see several ladies on this thread also had lobular BC! I thought it was relatively rare compared to ductal but I see I am actually in good company!

@londondragonite we sure are on similar lines - it’s a good side of mn that we can support each other with this chat.

I have no idea of the various pros and cons of reconstruction or not but will discuss with my surgeon next week. I have been offered another lumpectomy but think we will get to mastectomy in the end so would rather limit the surgeries.

reconstruction does mean more surgery down the line I think as implants only last so long. So much to consider but being alive down the line to consider them is a strong motivator.

Reading all these posts by so many wonderful women makes me feel as if I have a suit of armour.

At the moment my prognosis and treatment plan looks really straight forward, but thanks to you all I'm hopefully not going to get completely floored when things don't go to plan.

I've so far mainly kept off google so this is my main source of info.

I hope in the coming days, months and maybe years I'll be able to contribute and pay it forward to take some of the fear away for those that follow.

It really is so invaluable to know I'm not making this journey alone

I'm going to have to ask as I'm 'whittling' myself. I forgot to take a dose of anastrozole. I just completely missed it and didn't realise until I took tonights. I can't find out how long it stays in your system..does anyone know? Don't know what I expect other than to double dose there's probably not much I can do!

I know what you mean about mixed messaging. I had my treatment appointment with a lovely surgeon and MacMillan nurse who (I thought) were super clear about the cancer being treatable and curable - chemo then probably lumpectomy - plus went through all the HER + stuff etc. I got them to repeat that they said “treatable and curable” and that’s what I could my family. “Yes!” They shouted! Then two weeks later the oncologist said “it was treatable and curable but it was a significant cancer” I flipped out. His tone was completely more serious than my first appointment and he said I’d definitely need a mastectomy.

He talked about how amazing herceptin is and how much tamoxifen has changed the outcomes of millions of women all over the world. He also said my treatment is £100,000 and they wouldn’t be doing it if it wasn’t curable. Made me feel a bit like cattle!

After this I got a copy of the report to my GP cc’d to me via the post. These letters are obviously professionally written and in medical terms. They are fucking scary. There was nothing new in them but the terminology is firm and factual. I now make a point of not reading them. Too scary. The Term “managed for remission” sticks in my mind. That is the end goal. I’m on the second round of chemo. It’s a whole other world. The chemo unit nurses and the patients are really great and friendly. I’m practically the youngest person there (43) and there are people with all sorts of cancer types and grades and stages and they are mostly so hopeful and kind. For the moment, these are my people.