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Lobular cancer - awaiting tests and so scared

18 Oct 2021 17:43

I've been diagnosed with lobular breast cancer and referred for MRI, bone and CT scan.  I have two positive axillary nodes.  I am so anxious and scared and breaking down all the time thinking the results will be the worst case. Finding it hard to cope. The tumour was 1cm but I'm thinking with lobular it could be so big it's inoperable and I wouldn't know.

Lobular cancer - awaiting tests and so scared

18 Oct 2021 20:45 in response to Mum1409

Hi 

 

I have also been diagnosed with Invasive lobular breast cancer last week.,23 cm on mammogram 33 on ultrasound -or the other way round ? 

It is scary , sometimes I am rational but other times go into a panic. I had appointment with Oncologist on Thursday then they gave me a quick MRI appointmant which I had on Saturday.

Did they say if yours was hormone positive ?-mine is . I have decided I am definately having a mastectomy even if lumptectomy will suffice.I really want a double matectomy but Oncologist wont agree at present.

 

Sending you support x

Lobular cancer - awaiting tests and so scared

18 Oct 2021 20:58 in response to Minty69

Thanks for the message and so sorry to hear you're going through this too.  Mine is hormone positive and HER2 negative. I've read that this can be multi focal and bilateral so I think the safest thing would be mastectomy.  Have you any lymph involvement? X

Lobular cancer - awaiting tests and so scared

18 Oct 2021 21:13 in response to Mum1409

Yes thats what I have read too , but they also say they are not fast growing.

When I had checks at the breast clininc they said nothing showing on ultrasound for lymph nodes so didn't do biopsy there.Could still show on MRI though. Did yours show on ultrasound ? 

The oncologist referred to mine as a small cancer so I'm sure yours wouldn't be inoperable. 

They said two weeks for MRI results but I hope it will be sooner.

I think the hormone responce is  a really positive thing.

Have you looked at Victoria Derbyshire diaries at all , she had lobular and lymph node , it helped me to calm down a bit x

 

 

Lobular cancer - awaiting tests and so scared

18 Oct 2021 22:50 in response to Minty69

Yes mine showed on ultrasound so they did the FNA at the same time as the biopsy.  The doc said the cancer she can see is really small but expects there to be more on the MRI as it's reached the lymphs. 

have you got a follow up appointment booked?

 

I'll check out the Victoria D stuff - thanks for the tip 

Xxx

Lobular cancer - awaiting tests and so scared

18 Oct 2021 23:13 in response to Mum1409

Hi 

 

No they haven't given me any follow up appointments yet.

I hope you get your scans soon.Take care and let me know how you get on xxx

Lobular cancer - awaiting tests and so scared

19 Oct 2021 00:09 in response to Minty69

You too - keeping everything crossed for you xxx

Lobular cancer - awaiting tests and so scared

21 Oct 2021 14:14 in response to Mum1409

Hi 

How are you doing ? Any news on further scans yet ? 

Mine has moved quite quickly now , they rang me on Tuesday to say they have the MRI results and can I see Oncologist today.

He said MRI shows tumour 66cm -twice original size , but none shown in other breast -recomends mastectomy without immediate reconstruction, and lymph node biopsy ,which I Ok with. He gave me an operation date of 17 November.

I asked if chemo and/ or radio also needed he said probably so going to be a long slog but at least I have a plan.

Hope you are a bit further forward with some dates xx 

Lobular cancer - awaiting tests and so scared

21 Oct 2021 16:08 in response to Minty69

So pleased for you that things are progressing - you must feel so much better having a clear path to follow and a date for surgery already! 
 

I have had 2 out of 3 scans but not yet received an appointment for the final one so this is really dragging and I'm constantly anxious.  
 

Have they told you much about what surgery will be like? 
 

thinking of you - keep me posted! 
 

x

Lobular cancer - awaiting tests and so scared

21 Oct 2021 18:37 in response to Mum1409

Thanks ,yes I feel there won't be anything new to worry about now till the op -they can't give me anymore bad news until after that -if there is some !

Sorry you are still waiting , I would be the same , hope you will get the last one and the results and plan very soon.

They said surgery will be about an hour and go home the same day , drains in for a week or so and have pre op assessment next week.

Do you have children ?, I have a son who is 16 and autistic so hard to judge how its effecting him . My daughter is 21 and away at uni .We didn't know whether to tell her when I got the call back but decided she would want to know ,which she did and ia a great support to me.Thank goodness it isn't a hereditary type.

Do you have any local support ? There is a group about half an hour from us so I may try that when I am ready.   

xx

Lobular cancer - awaiting tests and so scared

21 Oct 2021 21:40 in response to Minty69

Wow, an hour and home the same day! That's amazing! 
 

I have two children also - 10 and 3 - they don't know anything yet and I doubt the youngest will understand. I'm glad your daughter is supporting you. Can your son get any support? 
 

I haven't looked up local support yet but it's a good idea.  
 

I keep looking at my boobs and telling myself it's spread all over them - I'm pretty sure they've never looked perfect and they're pretty dense but I'm focussing on every blemish and bump not sure exactly how much mammogram and ultrasound can miss.

 

xxx

 

 

Lobular cancer - awaiting tests and so scared

21 Oct 2021 22:05 in response to Mum1409

Aww sweet 3 and 10 keep you busy I expect.

They said to me no cancer in other breast on Mammogram, ultrasound and that was confirmed on MRI but I thought their probably was going to be because you start to think every feeling must be cancer related.Pulled my back this week and convinced that was connected -just a coincidence .Think all rationale disappears at the moment.

We told my sons special needs college as appointments  may intefere with picking him up etc and they will support him too.   

I will keep my fingers crossed that you get a traetment plan soon xx 

Lobular cancer - awaiting tests and so scared

27 Oct 2021 00:27 in response to Minty69

Hi both, I was diagnosed with stage 2 invasive lobular in my right breast right at the end of June. First consultant said I'd have to have chemo. Went for MRI results back showed 2 masses biggest one is 8.5cm. No nodes though. Had to have a CT scan as something was showing on my liver and kidneys but they turned out to be cysts. 
Saw the oncologist and she walked me through it all. 
as it's all hormone based ER9/PR8 HER- she's put me on hormone suppressors (Letrozole) and a chemo pill (Palbociclib) in order to shrink the tumour down. (Normal chemo isn't that great for this type of cancer so I was told) 

been on them 3 months now and had follow up MRI pills are working as the mass has reduced in volume so I've another 3 months to go till the next MRI to see what's next. 
was told surgery and radiotherapy but only once it's shrunk to a reasonable size. 
guessing I'm pretty lucky that I'm not loosing my hair but the side effects of the pills make you feel rough some days. 
hope you both get an easy ride. 

Lobular cancer - awaiting tests and so scared

27 Oct 2021 12:25 in response to anniedoesgum

Hi Annie

Sorry to hear that you are in the same situation, so pleased that the liver and kidneys were not effected.

My lump is 66mm on MRI ,double what they thought on mammagram and I'm having a mastectomy on 17 November -I wanted one anyway but Oncologist said due to size it is best and also thinks no immediate reconstruction is best too.It also says its probably multi focal on the report.

Are you hoping for lumpectomy ? I just wondered why they need to shrink it first ?

My Oncologist said I will probably need chemo and radio afterwards -though like you say there is doubt as to whether lobular responds that well to chemo -I think  its just a belt and barces approach.

Yours does seems like its going to be a long journey.I hope you have support.Have you looked at a new charity 

www.lobularbreastcancer.org.uk 

Quite alot of information on there.

Take Care x

Lobular cancer - awaiting tests and so scared

27 Oct 2021 12:46 in response to Minty69

Hiya

they told me they need to shrink it so they can do surgery. I'm glad in a way as I'm always scared of going under cos I snore so loud

I've been on that website and it's great that it's there now as all the other Facebook groups etc are full of ductile cases. Makes me feel such a fraud not going through what they are. 
It's even worse when I go to collect the chemo pills as it's in the chemo ward and everyone is wired up to machines and I just breeze in and out. 
but I get bad days (todays one) where I feel like and can't move a lot.