Panic at tumour size and lymph nodes affected

Hello all, I think I just posted this in the wrong area so am trying again…
I have been reading many discussions since my diagnosis on 29th Oct. I got my results today after mastectomy and ax clearance two weeks ago. My tumour size was 7.5cm and 16 out of 24 lymph glands affected. I have been coping pretty well really but am now in total shock. Suddenly it all seems too big for me to fight. Is tumour size an indicator of aggression. Anyone else with similar results. Please tell me i am not alone here?

Sorry you’re having such a hard time Liane. My tumour wasn’t as big as yours but I had 2 and a lot of high grade DCIS as well. I had 6 out of 14 nodes positive. Have you been told what grade the cancer is or whether you are ER positive or Her positive? ER positive is good and HER pos is not so good. Everyone’s cancer seems to be different.
I had a lot of poor prognostic features and i do worry it will come back but i’m still alive and healthy nearly 3 years from diagnosis. You should ask any questions you want answering. I wanted to know as much as i could and asked my onc to give me my chances. It’s up to the individual how much they want to know. I was terrified when i read my pathology report but so far so good. Just focus on getting through your treatment and hopefully you’ll have a healthy future.
Best wishes
Kelley

Dear Liane

I am sorry to read that you are feeling so shocked following your results yesterday, please call our helpline this morning for some support and information from one of our specialist nurses.

The helpline opens this morning at 9am until 5pm (Mon-Fri 9am-5pm and Sat 9am-2pm).

Kind regards

Lucy
Moderator
Breast Cancer Care

Thank you Kelley for your comments. It is so nice to hear from people who are several years clear of diagnosis. I don’t know the HER2 results yet but know that it is oestrogen positive. I know that it is Grade 3.
I hope your recovery continues,
Debbie x

Hi Liane

I was diagnosed in Feb 07 and have had mastectomy, chemo and have my last rads on Monday…

You are almost indentical to me - my tumour was 8cm and I had 14 out of 25 nodes. But I am ER neg and HER2 positive so could be better! But my surgeon also told me it could be worse! I remember when I had my post surgery chat and came out feeling sick, coming on these boards really didn’t help me at the time either as I think you want to be told everything will be ok and unfortunately no one can say that definitively. I ended up obsessing about people’s individual stories, recurrence, spread etc but then I finally accepted that everyone is different and no one can predict how you will respond to the very tailored treatment that you will be getting to fight your cancer.

My Drs have always been incredibly positive to me. They prescribe your treatement because they believe it will work for you. I am not saying positive thinking makes you better - god isn’t it annoying to be told that!! - but I do think that trying not to get stuck on the negatives and realising there are positives too can at least help you feel less scared and sick…or it did for me anyway.

You will read scary things about prognosis - and I made the decision early on not to ask for specific stats for myself - but something a lot of fabulous ladies will tell you on here, which is very true is that everyone is different. There are no rules with this bl99dy thing which is why is awful, but also why you should just take everything a day at time, keep as well as you can, scream and shout if you need to and ask your drs everything that you want to know. My drs told me that in the last 3 years they have made more advances with bc treatment than in the last 25. I am 28 and they have spoken to me about fertility and a good chance of fertility coming back so I can have children. There has been a definite focus on a future throughout my treatment so please don’t despair and let it freak you out too much.

You are far from alone - there are lots of people on here in similar boats…darn the profiles for not working as you could see what I mean! You can do this. It is a bl88dy b8stard that’s for sure, but you’re certainly not alone.

Please keep in touch with how you’re doing and if you want to chat or scream. I had 3 FEC and 12 Taxol, 25 rads (nearly!)

Take care

Liz xx

Hi Liane,
Welcome to the site but wish you weren’t here, if you know what I mean!
Of course you are in total shock and in the unenviable position of not having all the information at your fingertips, which can make you feel very frightened. Information is power and helps you feel a little in control of things, so make lists of what you want to ask your Onc and don’t stop asking until you have adequate answers. You really will feel a lot better once you have a treatment plan in place.
I don’t think that size necessarily matters, the grade gives some indication of how far away from normal the tumour cells are, but the most important thing is how your particular body responds to any particular treatment, and they will be monitoring you closely. There are loads of things they can do, and as liz says they have made huge advances in recent years.
For now, gather your friends and family around you, try to be honest with them about how vulnerable you feel, and they will respond and support you. They will feel incredibly vulnerable too, and it’s best to share it and feel weedy together!
You will be amazed at the kindnesses that come your way, from unexpected sources. ( And don’t be surprised if some people let you down, as they just can’t handle it - just move on and invest in those who do support you.)

Go easy on yourself and keep posting on here, so we know how you are doing.
I wish you all the very best
Jacquie x

Lizalou and jacksy,
Today has been one of my worst days. I feel bleak, alone, sad and worried about a lack of time. I just came on this site and read your two comments. Both are so truthful and honest and you are so right. Thank you for easing my mind today. Lizalou, 28 wow! You are just a baby and yet how strong and wise you sound. Well, if people like you can do it, so can I. A million thank yous. I hope I hear from you again.
loads of love to you,
Liane x

Hi Liane

Your results are not much different to mine, I had 8cm tumour and 15/20 nodes.

When you get these sort of results its very frightening, my Onc is very straight talking and blunt and didn’t paint a pretty picture, infact she scared the life out of me. But she knew the results would get me on the best treatment plan possible and she got extra funding for me, so far so good, first went to BC Oct 05, eventually diagnosed Dec 05 (hence the growth) had 4 fec + 4 taxotere + herceptin + tamoxifen, have just had loads of scans on spine, ribs, chest and liver and all NED. Hang on in there, a lady at my local support group had large tumour + 10/10 nodes and is still around after 11 years with no secondaries plus she was one of the first to take part in the gene trials too and positive.

I did go into quite a dark period after getting my results, even went thru is it worth having treatment, but yes it is as you still never know what side of the stats you will fall. I have also had a lot more check ups with consultants then other patients I met along the way.

Take care
Debbie X

Hi Liane,

I am sorry to hear that you are finding things so overwhelming. Sounds like you had a bad day today but I’m glad you have found this forum, everyone is so helpul and supportive here and mostly, as you can see, people understand and empathise with what you are feeling.

I was 27 at dx and took the initial diagnosis very well but I can empathise with that shocking feeling you had. I remember going in after mastectomy thinking they were just telling me when I start chemo, but to be told I had 20/23 nodes positive, a suspected secondary lesion etc etc.

Now, a few months down the road and I am finished chemo and rads. This time last year I never thought I’d be able to go through something like this but I have. I guess what I’m saying is you will get through it to. It won’t be easy at times but it’s amazing how one can adapt to a situation. Be good to yourself and take it easy. Easier said then done I agree.

Thinking of you and keep in touch,

Teacup xx

Hi Liane, Just a word to add to the others. It seems such a dreadful and bleak time for you just now. I was diagnosed 41/2 years ago, 5cm, grade 2, 12 nodes positive. Loads of chemo and radiotherapy which I found to be not too debilitating. And I’m still fit. We can do it honey, hang in there. xx

Hello Liane, It is frightening but you just have to get on with life. I was diagnosed at Easter have had three 5cm. tumours and 21 out of 24 nodes affected. Had TAC chemo after first Lumpectomy then Masectomy followed by total node clearance. I had a CT scan on Thursday and am having a Bone Scan next Friday results at Oncology on Tues 11th. Dec. If no Secondarys then just Radiotherapy to go. It is scary and the worst is having no family, thank God for this site, we’re all in the same boat though different. All the best for the future.
Val

Hi Liane,

I am exactly like you I want to know size of tumour and especially lymph node involvement I’ve become obsessed with them. Also Er and Her status but i guess it is just reassurance if we know people have survived there is light at the end of the tunnel. I wont say stay positive because i don’t myself but take each day one step at a time there are lots of ladies out there who are well down the line and as my OH says they are not on this website as they are either to old, or just getting on with life.
take care
love
C

Hello to you all!
It is so comforting to hear from you and know that so many are in a similar situation (not that I would want you to be here!). It is really nice to hear of people similar who are now getting on with their lives. If someone said to me 'this is what the next 6 mnths holds - chemo and rads and all that goes with it - but once through it you will live for 50 years, I could do it all with no complaints. I am just finding the not knowing bit too much to bear. Have i got 1 year or 5, or maybe 50? I’m even trying to work out what would be the ‘ideal’ number of years to live so i can stay around long enough to see my young children reach their special milestones! I suppose we are all in the same boat, but does anyone out there just think 'bugger this I am going to get through the treatment and then get on with my life? I AM trying to stay positive. At least i’ll have no hair in winter so hat wearing will be quite okay!
Liane

Hello!

Glad you are sounding a bit brighter today! I told my husband you said I was wise and he laughed a lot…cheeky man! I just think do whatever works for you - for me personally it’s a mixture of finding out as much as possible - but only up to a point. When i felt I had heard all I wanted to without going stark staring mad I stopped asking questions. I do think I’ll get through treatment and then get on with my life - would very much like to be able to forget about all of this for a while…so we’ve booked a lovely holiday to St Lucia in Jan!

zjlove’s OH made exactly same comment as mine - in that people who go on to stay well and healthy probably aren’t on these boards to tell us about it! With the exception of some whose comments are so so much appreciated as they really give me hope of a normal life after this.

Enjoy your weekends

xxx

Hey Lizalou!
Even more similarities here. I will have 6 x chemo and 25 x rads. But funnily enough I am going to St Lucia on the 23rd December for two weeks! My very kind father-in-law has organised a family holiday and I have been excited about it for months. My biggest worry about DX was i wouldn’t be able to go, but BC nurse has spoken to oncologist (who I should meet next week) and she has apparently said I can still go and start treatment as soon as i get back. We are going to a place called Smugglers Cove I think. How about you? When do you go?
Liane xx

How weird! I am so excited too - is perfect time of year to go away as it’s so flippin cold and miserable here! We are going to Le Sport on 29th Jan…it’s where my husband took me on a surprise holiday when we got engaged 4 years ago so has lots of happy memories

xx