Has anyone else got mixed lobular and ductal bc?

Hi again Ann,
We must both be on here at the same time.
My cording seems to have almost gone, it was very painful from my armpit to my elbow but I kept massaging the area gently and because I am left handed and need to use that arm a lot it cleared. I think it is still in my armpit which is giving me the pain but I shall work on it and hopefully it will go soon.
Can’t believe it is 3 weeks since your surgery, the time really flies when you are enjoying yourself!!!
Was surprised when my BCN told me my results weren’t back because I didn’t think they took that long with the ductal. If the Lobular is not ER+ PR+ then it will be the complete opposite to the ductal which is a bit weird. My Onc said it could happen. Also it could be HER+ and then I would need Herceptin. Very confusing.
Still trying to sort out non underwired bras - absolute nightmare. Found one mastectomy bra and that was out of stock and may not even fit anyway. Should have had double mx!!!
Well must be off, take care, love to you all,
Jane

Jane

The cording is a bit stomach churning now, because it has started ‘twanging’ on my elbow bone, when I do the exercises. I am trying to find a way of stretching my arm without it doing that, because I really don’t like it!

I asked if the lobular and ductal were both hormone receptive and they said they were. Mind you, when I got my results, they said I had mainly invasive lobular and a little bit of DCIS and a bit of LCIS, and not invasive ductal, which I was told I had originally. I asked for a copy of my pathology report but haven’t received it yet. Trust me to be complicated! I was HER2 2 and so they sent it off for a FISH test and it came back negative.

Good luck with the bras - and the chemo, of course!

Ann xx

Hi girls,
Sorry, ignore this…blame it on chemo head!!!
Jane

Hi girls,
How are you all, I am still waiting for chemo to hit me. I think I have been very lucky so far with only minor side effects. Unfortunately it has made my hair fall out a bit quicker than I was expecting. It was coming out quite well yesterday so I took the OH clippers to my head this morning and gave myself a no4 all over!!! Then I went out, drove to where I work and showed them all my new hair. Lots of compliments, most said I looked 20 years younger. I think its coming out in lower areas too so no more waxing for a while!!
Take care, love to you all,
Jane

Jane

Glad you are not having too bad a time - apart from the hair, obviously. Have you tried the wigs yet?

Ann x

Ann 04 - How did your appointment at the onc. go yesterday?
Marli

Hello Marli

Well, there wasn’t much to it really. The onc examined me to see how I was healing, and asked me how I am feeling. Because I am not sleeping very well, she wants to delay starting the hormone tablets for a couple of weeks. I was on HRT for a long time and she wants my hormones to settle down first. She has put me on the waiting list for rads - don’t know how long that is! Hope I get it over before Christmas. I am to have three weeks on the full breast and one week on the area where the lump was. Not sure why. My guess is it is to do with me being fairly small busted and it was quite near the edge, so there is no more left to take out, and they need to make sure they get it properly. I asked about my prognosis, which she said is good. Hope she is right!

Hope you are all ok. Love Ann x

Ann 04 - Sounds as though things went quite well. Are you not having chemo? I am to have the same rads as you with the extra week concentrated where the margins were slightly less but there was nowhere else to go. Had my scans today - BCN tells me they are only done when there are 4 or more nodes affected ( I had 2 the first time and 3 with the AC) so just waiting for onc. appt. Take care and hope you can starting sleeping better. Have you tried Bachs night rescue remedy?
Marli

Marli

No, I am not having chemo. I am post-menopausal and my sentinel node was clear and there was no LVI. The oncologist decided it would not be enough benefit to warrant going through it.

I shall try the Bachs night rescue remedy. I have the ordinary one but haven’t tried it at night. It is not that I don’t get off to sleep, just that I keep waking up again, many times. Annoying!

Hope you get your appointment soon.

Take care Ann x

Ann 04 - SNAP!I find getting a decent sleep very difficult, 4.40am seems to be my wake up time.But I decided to sleep in the spare room to allow hubby to sleep so tend to get up and make a cup of tea and read until I go back to sleep. No urgent matters to attend to next day usually so just snooze if I need to at the moment.Bought some relaxation CD’s and use them to help and to prep. me for the chemo that I anticipate. Do you feel relieved now you know what is ahead?
Marli x

Marli

I seem to wake at about 1.40am and then many times, thereafter. I have given up looking at the clock. If I am too hot, I can’t get back to sleep, like last night - but if not, I go back to sleep and wake again a bit later. I have concluded that I am sleeping less deeply and wake during the shallow part of my sleep cycle - plus, when I want to turn over. Dreadful!

Most days I do feel relieved, but that is mainly because it has not turned out to be as bad as it could have. On bad days, I feel a bit depressed that this has happened at all. I have to try and pull myself together and realise that it could be much worse. How are you feeling about things?

I am still waiting for my pathology report. Not much chance of getting that in a hurry with a postal strike.

Take care.

Ann x

Hi Ladies,
Good news from the Onc Ann, it does make you feel a bit better when you know what your next stage is. I was so glad when I finally moved on and if I had had a crystal ball I would have had the mx at the start and moved on a lot quicker. Hey ho it wasn’t to be and I am finally at the next stage.
Its already nearly time for my next cocktail, I’m back Tuesday and see the BCN first to be fitted for my proper prosthesis. I went out in a rush to get some shopping the other day and realised as I was walking across the car park that I had forgotten to put my booby in!! I was sure everyone would notice the strange lopsided woman but thank heavens for a handbag to clutch to my chest. That probably looked worse!! I now have a note on the front door ‘W/B’ to remind me wig and booby!!
I too have had some very strange sleep patterns since starting chemo, they give you steroids with the cocktail and I think that was what kept me awake for the first few nights but I did also have to have a nap in the day then. Since then I never know whether I will sleep or keep waking up and end up feeling very tired in the morning. Yesterday I did not feel well and was very tired but I have had a busy week and I think that has not helped. I taught a class today then hit the supermarket and then prepared for my club tomorrow so I am absolutely shattered tonight. I have also joined the modern world and bought myself an ipod!! I’ve put on lots of relaxing music that I can listen too at night if I can’t sleep. I shall probably strangle myself with the headphones!!!
Take care and love to you all,
Jane

Take care and love to you all,
Jane

Jane and Marli

How are you doing?

Ann x

Ann 04 Had results of abdominal and bone scans, both fine.Just waiting for onc. appt. next Thurs. Watch this space! Marli x

Marli - I am so glad the scans are clear. Good luck with the onc appt.

Ann x

Marli - How did the onc appt go today?

Jane - How are you getting on?

Ann x

Ann 04 Thank you for asking.Saw onc and confirmed chemo and rads and hormone treatment will give best chances for me as lymph nodes are involved. Should have been starting next Wed. but asked if I could wait until 18th so that there is a good chance I will be OK for Christmas and poss. Ronan Keating concert in Feb! Decided some forward planning was needed so that life can be a bit more normal! Go Monday for blood tests and see onc. nurses for info and booking in, also got appt for lymphodema nurse on same day. It’s all go. How are you?

Hi girls,
Howe are you?
Had second FEC now and side effects were a little worse this time. Nausea has lasted a bit longer and I was actually sick on the first day which is unheard of for me!!!
My lovely husband has shared his cold with me which has not helped either!! Have to be very careful about temperature and can’t take paracetamol in case it masks any problems. Needless to say he has been sleeping with the dogs!!!
Only got one more FEC and then move on to 3 x TAX so I am almost halfway through already. Hopefully my good week will coincide with Xmas.
Ann, finally had result back from lobular cancer ER+ and PR+ like the ductal and yay HER- so will def not have to have Herceptin. Was a bit concerned about that because onc told me it could have been different to the ductal.
Ann, how are doing with your tratment?
Take care and love to you all,
Jane

Marli - It’s good that you are able to plan your chemo so that you can have some pleasure in the midst of it all.

Jane - Lovely to hear from you again. Sorry the chemo was worse this time, and that you have a cold. You made me laugh about your husband sleeping with the dogs.

Did either of you have any flu jabs? I had the normal one last week and am waiting for the swine flu jab, but the surgery hasn’t received any yet. I am trying to get it in before the rads. I now have a provisional date of 8th Dec, a week earlier than I was first told. I enquired about private rads and got a quote of over £8,000! They would be able to do it 3 weeks earlier, ie 8 weeks after op, instead of the 11 that it is due to be. My onc said that in my case it will not make any difference having it later. I am taking her advice and hope she is right.

I have started Letrozole this week. It is hard to know whether any symptoms I get are from stopping HRT or the tablets, or the flu jab, or anything else…! I am still not sleeping well and have a tingling sensation in my legs. Apart from that, I am ok, thank you.

Good luck for next week, both of you.

Love Ann x

Hi Ladies,
How are you all, Ann how are you getting on, it is ages since we last spoke.
I am now half way through chemo, had third dose last week so coming out of the fog and looking forward to a good week and a half before next lot which is a different type. Side effects will be different and hopefully my hair will start growing again. Have still got eyebrows and eyelashes at the moment but not sure whether they will go or not. Have been very lucky with SE so far, the nausea and a bit of sickness hasn’t been nice but not as bad as some ladies have been getting. I get a squiffy head for a week or so and that is a bit unpleasant but that is all. Still, half way through already, doesn’t time fly when you having fun!!
How are the tablets going, have you started your rads yet? Guess you won’t be going private!!
Take care, love to you all,
Jane