I hope you ladies are all doing well.
2 weeks ago I was told that I have a recurrence of Lobular breast cancer 
. I had a CT scan and am getting the results on the 6th January to see if it’s spread. Obviously I’m upset and really worried and have a few questions:
If it hasn’t spread will I be monitored for future spreading?
Does a recurrence mean that it is now in my system and can show up anytime, anywhere? I know it can show up in the bones, brain, etc can this occur further down the line or if the scan shows my body is clear I am safe and it won’t spread?
I’m just trying to understand what I need to ask the surgeon depending on what the results are.
I know I will have to have a Mastectomy but no radiotherapy because I’ve already had it but that’s all I know really.
I really appreciate anyone that has been in my position and can help with their experience.
Thank you for your help.
Sue
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Hi, I’m currently the same, originally a reoccurrence, but now waiting for more scan results as they believe it may have spread. I think it’s a waiting game (again) until they have all the information they need and then asking your questions. I think I must be glowing from all the contrast dyes I have had! They do have a huge arsenal of medication to hand, and I am trying to be patient. Sending you very best wishes for your appointment on the 6th xx
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It’s such a worry isn’t it 
. I’m not too sure how bad it is if it has spread, I know that it can’t be cured, just treated but now I’m asking myself silly questions like will I still be here in 5 Years time etc.
Have you been given any information about your future?
For obvious reasons I’ve got to wait for the results and then go from there but it’s hard to not think what’s next isn’t it.
I was also wondering that if it hasn’t spread at the moment could it spread in the future and are we going to be monitored closely from now on.
I guess I just need to be patient.
I wish you well on your new path and I hope it’s better news for you than you are expecting
My cousin has been under treatment for over 5 years for bc and she’s doing really well. … she’s not triple negative (I am). And she said to me that if one drug stops working, they have another one to try.
My husband called a support line yesterday, and their advice was very good, ie we are where we are, and as much as possible avoid the what ifs until we know what is…
Like you say it’s so hard though! I know that an MRI is raising concerns about additional areas in breast (my original reoccurrence is in the lymph nodes) and they will possibly want to biopsy those areas after outcome of PET CT scan.
However, I am trying to stop overthinking! But so easier said than done!
We are heading off to the coast tomorrow for a few days, so that shall be a lovely distraction… I’ve also booked a few other things to keep me occupied.
Hope some of this helps.
Take care, Caron x
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Hi Caron, how are you? Have you been feeling okay. I hope wherever you are you are having a lovely time and it’s taking your mind off everything for a while.
When do you go back for your results? What have you done so far?
I just want to know if it hasn’t spread am I still in a bad position, the cancer is still floating around my body and can turn into a lump etc or if it is likely to spread at some point I’m the future?
So many questions that I need to be patient with.
Anyway, please just have a a really nice time. Sue x
I hope you are well and you get good news on your results day.
I had lobular bc in 2020 and went into a trial 2023 (TrackER trial). I was told I have CTdna (circulating tumour dna). I am being closely monitored as scans didn’t show anything. I don’t really know anymore just the fact I’m being monitored…..which is a good thing isn’t it?!
Hope all goes well
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Hi Sue, I’m having a lovely time thanks. Saw loads of seals today which was absolutely beautiful (but cold!).
Heard today (my birthday!) that my appointment at the breast clinic is on Wednesday, so not long to wait now. Just trying to keep positive and calm, much easier said than done, but trying!
You take care, hopefully we will both know more soon!
Caron x
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Thank you so much. It’s so promising to hear there are so many treatments out there that can help us. I guess we also have hope .
I really hope it goes well for you and you benefit from this. Keep in touch and take care x
Happy birthday 
I hope you have had a lovely day and it’s taken your mind of Wednesday a bit.
I’m so up and down with my thoughts, one minute I’m positive and I’ll be fine, the next I see something on Tele and I’m back there worrying. I’m fine when I know what’s what, it’s the unknown that I struggle with. Once they give me the results I will deal with the news fine and look at what’s next, the Mastectomy etc, I’ll deal with that much better and then support my family and friends. I just hate not knowing.
Anyway, I will be thinking of you Wednesday and hope we both get good news. In the meantime, look after yourself and keep being strong xx
Well, today’s the day I get my results from my CT scan to see if it’s spread 
. I’m hoping to find out my plan too.
I hope you ladies are all doing well and the wait for results etc is not too bad for you.
Chat soon
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Hi Caron, just wanted you to know I’m thinking of you tonight. I hope your appointment goes well tomorrow. x
Hi Sue, thank you for your good wishes, so kind.
I hope your appointment went ok?
I saw the breast surgeon this morning. The good news is that its only spread to the lymph nodes in the chest wall (as well as the axilla). These pesky sods can’t be removed but can be treated, so as expected, we are being referred to oncology for treatment.
The chemo treatment is a bit difficult to predict as they have to take all previous treatment into consideration, and there are lots of options available, and the fact that I only finished treatment in February last year.
Oh yes, I do also have a bit of arthritis in my foot!
I am very relieved its not gone anywhere else, so used my costa card birthday treat for some biscuits!
Hope you’re ok with how your appointment went!
Caron x
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Hi Caron, I’m so glad it’s not spread further but I’m sure you are still worried 
.
Did they say that it can be controlled so it doesn’t spread in the future? Sorry that might be a stupid question. How are you feeling in yourself about this? You sound incredibly strong .
As for me, there are no signs currently that it’s spread but was prepared by the doctor that once they test the glands this could change but I should remain optimistic. Evidently, Lobular breast cancer isn’t always easy to spot on a CT scan.
I have a Mastectomy planned for the 4th February but not sure which treatment after that, probably Letrozole. I can’t have radiotherapy and it’s unlikely I’ll have chemo.
So considering what I could have been told it was an okay appointment. My surgeon even joked by saying ‘only just a small operation to think about now’. I know what he means, it feels like that’s the least of my worries. I’m sure like you, I’m so worried it will spread in the future, especially with this being a recurrence.
We are still here though so consider myself very lucky.
Look after yourself. Sue x
Hi Sue
Glad it was an “ok” appointment, and I have everything crossed for you that the glands behave.
Good luck with the mastectomy, and it’s OK to keep asking the medical professionals the questions.
My next thing to do is working out what questions I want answered when I see oncology… I suppose I am going to have to live with this, and I am trying to think what I want to know!
However, I am booking tons of nice things before my chemo starts (again!) And hoping whatever the treatment is, that it’s bearable!
You take care xxxx
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I can’t imagine how you are feeling Caron though, you sound incredibly strong to me.
I love the fact you are booking loads of treats for you, you deserve it. My family have all been coming around more often which is my treat, we are incredibly close and see each other as often as we can but a few members live over an hour away so it’s not always easy to find the time to see each other. My husband also suggested we go abroad before my treatment starts but the insurance is very expensive .
Please keep us updated with your treatment and I wish you so much luck going forward.
Hi ladies, I have a week to go until my single mastectomy and have a couple of concerns.
When I arrived for my last operation date they decided not to operate due having the start of a cold and having asthma, I understood but was extremely disappointed.
Whilst the surgeon was discussing the risks and why it should be cancelled he explained to me that he was thinking about my operation on the way in to work that morning and said he was trying to work out how he was going to do the operation. He explained because I have had 5 operations on my breast, including a perforated flap reconstruction which failed, he wasn’t sure how he would remove all the necrosis and cysts on my chest wall and under my arm as well as remove the breast. He said he had not removed a perforated flap before. This concerned me a bit, surely you wouldn’t leave it until the morning of the operation to think about It, he had reassured me that I would be left with very few lumps etc to worry about once the breast has been removed so now I’m not sure.
I’m thinking of trying to make everything clear in my head as to what to expect after the operation and was wondering if you lovely ladies have had the same as me before and was you pleased with the outcome or can you think of anything I should ask before the operation. I’ve been told very little about what to expect after the operation, how I should sleep, bath etc, What’s the best type of bra to wear etc, I have most of the answers but I always seem to come away feeling the appointment was rushed, it feels like because this is my second time around I don’t need the support I needed at the start but actually I dealt with it better first time around.
Sorry, such a long post but as you can probably gather I am a bit anxious.
Big hugs to everyone.
Hi Sue,
Sorry I can’t help, but I’ve just seen your post and wanted to see how you are doing? I really do hope you got the reassurance you wanted?
I also really resonated with what you said about the feeling that you don’t need the support the second time around, when in reality, I am a lot more scared this time round.
Do let me know how you are doing and where you are at now. I only came out of hospital on Monday after an 8 day stay with neutropenia so I’m just starting to catch up on things.
Caron
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Hi Caron, so lovely to hear from you and thank you for remembering me 
.
How are you doing now? It sounds like you have gone through so much. Did they say what’s caused it? Your cancer treatment I’m guessing? I had to look it up because I’d never heard of it before.
I’m okay thank you, dealing with a lot of emotions really. I had to stay in hospital, only for one night though, unlike you. I was bleeding quite heavily so I had to have a doctor check on me every 2 hours, he was lovely but I could tell he was concerned. However, my own surgeon saw me yesterday afternoon, he was in a rush so he just checked the dressing and said he was happy for me to go home with instructions on what to do if it gets any worse. So I got home last night.
I’m doing okay, very soar under my arm. I looked at it yesterday to check on the dressing and I was so upset, they have cut me from my back right round to my other breast, I wasn’t expecting it to be that long but I think it was because I had a perforated flap operation which left a lot of necrosis and cysts under my arm, he must have removed them all and I am grateful for that but it was a bit of a shock and the first time I really cried. I feel better today though.
Thank you so much again for asking. It’s so lovely to hear from you. x
Hi Sue
Hope you are on the mend and your wound is recovering? Have you any exercises? And more importantly how are you feeling?
My chemo doesn’t restart until next Thursday because I was so poorly, but I am recovering now and just spent a few days in Herne Bay, which was beautiful. It was great to see the sea and the sunshine. I’m finally starting to feel a bit more normal and am somewhat dreading next Thursday, but my dose has been reduced by 25% so hopefully I won’t be so ill this time 
Sending you my best wishes,
Caron
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Oh Caron, I’m so sorry you are going through all this and here’s me worrying about myself.
I really hope Thursday goes better for you and it’s a better dose. I’ll be honest and say I don’t know too much about the different chemo doses and types you can have but. I am aware how it can make you feel. How long do you have to have chemo altogether?
Herne bay sounds lovely and I’m so glad you managed to go away for a few days. Like you, I love the seaside, there’s nothing better than walking along the front, eating a bag of chips or an ice cream. Are you planning anymore days away? We own a chalet in Norfolk, I love it down there but it takes about 4 hours to get there, what with one thing or another we haven’t been able to use it too much the last few years and was hoping this year would be a better year but it’s not started off too well has it. We are hoping to get down there at Easter with our grandchildren 
.
Anyway, I hope you are doing better and not worrying about Thursday too much. Look after yourself.
Sue