Is it back or am I just having a wobbly?

Not sure if I’m posting this in the right place, a lot is/has been going on and my head is all over the shop.

I was originally diagnosed in February. Had chemo (3 x FEC and 3 x Taxotere) followed by left mastectomy and node clearance in August and finally 15 rads. Histology showed 8cm IDC Grade 3 hormone receptive with 5/19 nodes infected. Am now on Tamoxifen.

Original mammograms showed some indeterminate calcification in other breast so had stereotatic core biopsy done in October. Luckily results were clear.

Had right ovary and 5cm cyst removed this week - was supposed to have had both ovaries removed but due to scarring from possible endometriosis (if that’s how its spelt) or infection, left ovary is stuck to bowel so too risky to remove unless histology on cyst shows further surgery required. Unfortunately, hospital didn’t think to tell me that this was the reason until the day after my op so, needless to say, my mind had gone into overdrive.

About 4 weeks ago I noticed a swelling at the base of my neck just above my collar bone - in the same place as red patch had been following rads. As I was laid up with a cough and cold, saw my GP hoping that he would say that it was just the remaining node(s) working overtime to fight the virus. GP agreed that there was a ‘fullness’ that I didn’t have on the other side but didn’t know what was causing it - he said that he wasn’t good at giving false reassurances and that I needed a scan or something to see what was going on. He referred me back to the breast clinic. Saw breast surgeon on 1 Dec who thought that swelling is due to scarring from rads and gland activity due to virus but said he would arrange a scan to be on the safe side. Have now got ultrasound and FNA scheduled for 19 Dec.

Whilst all this has been going on, my mum has also been diagnosed with bc - 3cm IDC grade 2-3. She is going in for mastectomy and node clearance on 19 Dec. I haven’t told her about my appointment because she has enough to deal with at the moment.

I am now also worried for my daughter (age 13) - when I was diagnosed there had been no immediate family history of bc so no genetic testing done. Obviously that has now all changed.

Sorry if I’ve gone on a bit (or a lot) but wanted to clear my head and wondered if anyone out there has got any similar experiences.

By the way, the cough and cold has gone but the swelling is still there.

Hugs to All

Spongebob x

Hi Spongebob,

My understanding is that you need two family members under 50 before you start worrying about genetics. I assume your mother is over 50? BC is just so common in older women, that hers is very unlikely to be genetic.

As for your daughter - I was told that my daughters should start screening 10 years before my age at dx - ie I was 44 at dx, so they should start going for screening at 34.

Hi Spongebob

You may find it useful to read the Breast Cancer Care webpage on familial breast cancer as it includes information and advice about screening when there is a family history:

You can read this on-line by using the following link :-

breastcancercare.org.uk/content.php?page_id=817&source=43

Please feel free to call our helpline for further support and information on 0808 800 6000 weekdays 9-5 and Sat 9-2.
I hope you find this helpful.

Best wishes
Lucy

Hi RoadRunner and Lucy,

Thanks for your responses. Having another read through my post I think I ended up putting it in the wrong category but, as you can probably tell, I have a lot on my mind at the moment. I had just thought that I was coming out the other side when everything kicked off again.

My mum is 78, I am 47. My aunt (mum’s sister) had bc about 20 years ago - she would have been late 50’s/early 60’s when dx and, I had a cousin (maternal side again) who died from bc secondaries 4 years ago. My cousin was mid 40’s when first diagnosed. There doesn’t seem to be any set pattern but BCN thinks too many incidences to be ignored.

I mentioned genetic testing to my breast surgeon when I saw him at the beginning of this month but he said to sort out the problem with my neck before worrying about this - easier said than done.

Now need to see what Friday brings for both myself and my mum.

Hugs to all

Spongebob x

Hiya, so sorry for you its just not what you want to deal with.worrying as im always feeling neck as like you had the red patch I will be thinking about you and really hope that its noting cancer related, like they say could be scar tissue, they are the experts. Sounds really hard for you at the moment what with your mam its awful, its never ending.

Im off for bone scan tomorrow cos of bad back and stiff neck - almost cancelled it as scared of results just want to get back to some sort of normality.

In terms of genetics there was a lot of history n both sides and I got results few weeks ago to say I do have the brca 1 gene - was upset and have to think about another masectomy but what got ot me was my brother and parent sget results this week, and really feel for them as my brother has a 3 year old but like everyone keeps saying knowing about it gives you options and much better screening

Keep us updated and chin up
xxxx

Hi Lisaf/Cathy59

I had been reassured when breast surgeon said he thought scarring and gland activity but, now that cough/cold gone and swelling still there I have started to panic again. Need to take a deep breath and wait for Friday. Typical though that I will be waiting for results over Christmas.

My mum seems to be facing up to things quite well but that’s her public face if you know what I mean. She said that she had only checked herself because of my dx and had found some puckering but no lump. Because TLC campaign info had said that this was something to look out for, she had seen GP and the rest is history.

Things are even more complicated because my step dad has Parkinsons and respiratory problems and mum is his main carer so we are in the throes of sorting out respite care for him for the next few weeks. In some perverse sort of way, I think this is helping to keep mum’s mind focused.

I want to get genetics tested, not so much for me but for my daughter’s benefit. If I am a carrier then we will know that she has to be even more breast aware/screened etc. If I am not a carrier, then she should be at no more risk than anyone else.

Lisaf - How have you recovered from your ooph? I went into total panic when I found out that gynae had only removed one ovary and not both as planned. I was convinced that this was because the cancer had spread. Was Ok when they eventually explained - although they could have done this on the day of my op rather than the next. I had kept asking nurses why and all they would say was that the doctor would explain when I see him - needless to say, I didn’t get any reassurance from that. Did you have a post op appointment? I’ve been told that they will write with histology results and will only get another appointment if they think further surgery is needed. It seems that because they did the op keyhole no follow up is needed. Stitches should dissolve within a couple of weeks - even though I’m not really sure how many stitches I’ve got as I have a buttonhole rather than a belly button and can’t actually see. If any problems, I’ve been told to see my GP.

Will keep you posted.

Hugs to all

Spongebob x

Lisaf,

Sorry, forgot to say hope scan goes OK and it proves to be nothing.

Let me know how you get on.

Spongebob x

Scan was a nightmare but wont bore you with details - waiting anxiously for results - its horrible aint it.

Totally recovered from Ooop, must have been awful not knowing why only took one out! Scars are just about healed and feel okay. Got my histology which was fine, but still have a follow up appointment, which he told me I would have - suppose its to check out side effects etc.

Take care
x

Hi,

Had the ultrasound on my neck yesterday. They said that there was no obvious problems with the lymph node so didn’t do the FNA as they said there was nothing to do FNA on. Thank God! Radiologist said that swelling probably is as a result of scarring but will refer findings back to breast surgeon who will probably want to keep an eye on things. At least that’s one thing off my mind for now.

Mum had her mx yesterday. Went to see her last night only to find her moaning about hospital food - that’s a good sign as far as my Mum is concerned!

Thanks for your support and words of wisdom.

Hugs to all

Spongebob x

Glad things went okay, sorry for delay in replying couldnt find the post. My bone scan was okay too, just degenerative in few places!!
x

Hi Lisaf,

Glad everything turned out OK with your scan - I suppose we will always get in a panic over something or another! Hope the waiting for results didn’t upset your Xmas & New Year too much.

My swelling is still there but am due for a ‘routine’ appointment with breast surgeon in a couple of weeks, so hopefully can nail him down to something which will confirm conclusively that swelling is due to scarring - I don’t particularly like the word ‘probably’ and would rather hear ‘definitely’ if you see what I mean.

Lets hope 2009 brings better things for all of us!

Hugs to All

Spongebob xx