The outlier

Lythe

Hi all, I’m back again. In feb this year they found a new tumour which at the time they thought was a bit they had missed from my lumpectomy but now they are thinking is a very early recurrence (2 months post finishing herceptin). Last week I noticed some discolouration on my breast near my nipple which they biopsied and found it was the cancer on the move and had come in to my skin via the lymphatic system (despite being on chemo). The last week has been the usual whirl of staging scans which have all shown it contained to the breast still. Yesterday I had a mastectomy where they also took a large amount of skin and pulled up my stomach skin to cover the gap and they did an auxiliary clearance. I’m feeling terrified of what is to come and it’s not helping that the drs seem genuinely worried too and say things like “I’ve never seen cancer move this fast” and the like. They have all said that there is hope that they have got it all now but I feel like that’s a pretty small hope. I’m scared and sad and I feel like I don’t fit in anywhere for support. I’m not early breast cancer, I’m not a survivor and I’m not yet metastatic. But I’m scared I could be dead within months the way things are going. I’m her2+ er- and have been on herceptin, perjeta and taxol but I’m guessing that’s changing soon. I get the results from pathology next Thursday and I guess they make a plan from there depending on what they find but it all feels pretty hopeless. Some days I find I can feel calm and ok and other days I just cry which feels like a waste if I haven’t got many days left. I just want some better luck to come my way and I’m tired of being the outlier. 

Halla

How traumatic for you @lythe, so sorry to hear...it’s got to be a good thing that they are saying it’s confined to the breast though right? And they have got onto it so quickly. Chances are they have got it all and you will be fine! Fingers and toes crossed for you 🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻So hard waiting for pathology. Hugs xxx

Mazbeth

@Lythe you definitely belong here and we are here for you. You know from your initial diagnosis that this waiting for results is the worst part. Try not to get ahead of yourself and just deal with what you know - it is looking like it is contained and you have taken a very proactive step by having the mastectomy. You are going through so much and it is so important that you get good support. All of us here have had very individual experiences, but all of us, including you have faced the shock of diagnosis and all the feelings that go with it. You fit in here and you are not alone. Jump on here whenever you need, one of us will be around. Take care x

FLClover

It is a scary situation you’re in. But don’t let the doctors scare you even more with what they’re saying. Doctors don’t know everything. And you don’t need a label to be here and get support. Ca is ca, it doesn’t matter that much at which stage you are. You need support and that’s the only thing that matters, so it’s good you’ve reached out here where you can get support. And the ca was contained, so that’s good news. If you feel like crying then cry, as it’s good relief. But please don’t feel like you don’t have a lot of time. That’s your fear. You have as much time as you want. No one can tell you how much time you have but you. Start believing in your body and its strength. 

Hugs to you ♥️

Lythe

Thank you so much for your support. I’ve just been feeling so isolated and scared. I am trying to have faith in my body but I’m struggling. And you are all right, the waiting bit is always the hardest. I’m just not sure how much clarity I’m going to get even when the waiting is done. They don’t really seem to know what to do next. But I guess I have to trust that they will make the best decisions they can and I will do the best I can to try to get on top of this. Thank you again. 

Mazbeth

One thing I learnt along the way that when I was absolutely paralysed with fear is that I would watch every facial expression of anyone who was treating me and I would replay every single word or comment that they made over and over in my head so I could analyse it - trying to search for answers which seemed to take forever to come. Often those people including doctors and the multitude of other people who you come across say ‘off the cuff’ things or they think out loud and don’t realise that we are sitting there recording in our brains every little detail. (It only took a raised eyebrow by a radiographer to send my mind into a frenzy.)

Pretty normal considering what is going on, you may find it really helpful to have someone with you who will be able to be your second set of ears - that could be a breast care nurse, a friend, someone who will be listening for you. Remember that your doctor will also be taking your file to the MDT - multi disciplinary team - so you will have a lot of eyes looking at your case and they will all be feeding in their suggestions for the plan moving forward. Even though I think my doctors are great, I was very reassured knowing that it wasn’t just one person making all of the decisions. 

Your doctor may have had one of those thinking out loud moments, but be confident that they will be sharing your situation with a group of highly skilled people who most likely have seen this situation and will be able to give their expert opinions. 

It’s hard. Everything that seemed so sure yesterday has been turned upside down today. This is going to pass. You will have a plan. In the meantime try to keep busy - do stuff that brings you joy - walks, sitting outside, reading, puzzles, solitaire on your device, colouring in, chatting to friends - whatever it is that will give your mind a rest. Also, the Cancer Council has a great support service which I totally recommend. Take care x

iserbrown

@Lythe
I found myself feeling teary reading your post.  I can feel your concern, fear of recurrence.
I have a friend similar to you, had the full chemo and herceptin treatment only to have a recurrence.  It's those pesky stray cells.....here's hoping the pathology suggests they've rid them for good.  Hope you've got yourself busy,  going for a walk, reading the paper, sitting out on the verandah, any distraction. 
Maybe go back to page 1 on the Friday Funnies 

Take care and know we're willing you along for good results

arpie

I am So sorry to read that you’ve been dealt such a cruel set of cards .... yes, the waiting really sucks for the results.  Try and Keep as busy as you can, doing the things you love to help pass the time and we’ll all be praying for good results xx.  If you find your sadness is getting on top of you, Please reach out for help ... the professionals will be able to give you coping mechanisms.  As the others have said, spill your fears here and we’ll do our best to help you thru this tough time and moving forward as well ...  xx.  Definitely take a good friend with you to any appointments .. my sister in law was a godsend to me.

take care, our thoughts are with you xx

FLClover

It is an isolating disease. I’m pretty sure we’ve all felt it at some stage. And boy is it such an unpleasant feeling!! But please know that you’re def not alone. We’re all here for you, and so is your medical team. They are def very experienced and skilled at this, so will have a good plan. Waiting is terrible, so try not to wait. There’s no point. After my main surgery last year, I realised it would take at least a year for all treatment etc to finish. And I was sick and tired of constantly waiting for this and that to enjoy myself. I’m talking about a decade before my diagnosis. There was always something else to do first before I could finally relax and stop worrying and just have fun, on my terms. So I thought stuff it. I can’t spend more time waiting and stressing and feeling horrible. So I decided I was ca free from then on, and the radiation etc was just for good measure. I had already changed surgeons and felt confident in my medical team to do what was best (with my say included of course). And then just started to focus on relaxing and enjoying myself. It wasn’t as easy as said, but it was much better than sitting around in self pity and feeling devastated and sad. I also was seeing my wonderful psychologist, who helped me release a lot of my fear and sadness from years prior. Because what’s the meaning of life after all, if there’s no fun and pleasure involved. So just tell yourself the ca is gone, it’s time to focus on yourself and good times, and further treatment is just smth that will happen along the way. 

And it is sometimes hard to trust our bodies, I know that well. But tell yourself you trust it anyway. Our body listens to our words, so every morning and night tell yourself that your body is fantastic and working so well in keeping you in optimal health, and smile as you say it. Eventually you will believe it, because it is actually true. 

Good luck with all this, and hope to hear you’re feeling better soon ♥️

June1952

Sending you a BIG cyber hug,  Our thoughts are with you.  💖💖💖💖

Dory65

You are in my thoughts @Lythe, and I'm keeping everything crossed for you. You are not an outlier. I hope the trained staff at BCNA get in touch ASAP. Do you have a Breast Care Nurse or McGrath Nurse? Sometimes you have to self-refer, if your oncologist or surgeon have not done so. Big hug. xxx

Lythe

I have a McGrath nurse who I haven’t been able to get hold of with this latest scare who is great.  And the breast care nurses at the hospital have been good it’s just that it’s such a short period of time you get to see anyone. I’ve been referred to a psychiatrist but that got a little delayed due to some paperwork issues but hopefully that will come up soonish. It just gets overwhelming especially as it feels like I’m no longer following the ‘normal’ ca path anymore. Last year I took great comfort in statistics and statistically speaking, I looked like I did great! Now it’s all even more uncertain. But I have gotten a lot of comfort from everyone’s messages and I’ve been distracting myself with my kids and also getting in some meditation to calm that monkey mind. 

Michele B

Hi @Lythe, haven't been on here for a while but reading your post just made me want to send the biggest virtual hug to you. Not much that I can add that others haven't said but just know everyone is here for you.
Michele xx

Lythe

Just thought I would update. The surgery results came in on Thursday and they got clear margins. There were 5 focal points ranging in size from 1mm to 15mm growing out of an area of treatment effect. It was also in the nipple and skin around but doesn’t seem too widespread. All of the 11 lymph nodes taken were clear. So from a surgical perspective it was about as good as it could be. The surgeon said her 3 things she was most concerned about looked good (being the tumour being attached to the chest wall, extensive skin invasion and lymph nodes). It was weird in the appointment because while they were saying things looked good it always sounded like they were about to say “but….”. But the but never came. I’m seeing the oncologist on Wednesday to find out what their plan is. So far it sounds like she is planning on doing more of the same which doesn’t make sense to me as they have said it was treatment resistant. I guess I will find out the details on Wednesday. 

arpie

Terrific @lythe. That sounds SO good ....   I hope you can get out & celebrate appropriately (if you are up to it!)

Take care & all the best for your Onc appointment xx  

FLClover

That’s certainly good news @Lythe! Make sure to ask your oncologist about the proposed treatment and all the whys, especially since they initially said it’s resistant to it. If they say it’s just for good measure, be skeptical. Sometimes it does more bad than good. Not knowing what to do shouldn’t mean just doing what is standard as that can be very harmful, especially long term.
Good luck 🍀♥️😘