How late is too late?

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I’ve just been diagnosed but I’m very alarmed because the consultant diagnosed the cancer immediately just by looking and feeling the breast. I then had a mammogram and a biopsy, but no treatment plan as yet as he wants to check for secondary cancer. The nurse said everybody who had been diagnosed was given the second lot of tests but it hadn’t even occurred to me that I might have secondary cancer and now I’m terrified. (It’s a private hospital so I suppose they may do all the extra scans on everybody).

I haven’t been told what grade the breast cancer is but I’ve had the lump for about three months so am assuming it is advanced.

Friends keep saying how good it is that it’s been caught early, but I don’t know what early is and I haven’t the heart to tell them I’ve had the lump for months rather than weeks.

I just feel awful and desperate.

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Hi Seafarer and welcome to the BCC forums

I am sure you will receive valuable support and shared experiences here very soon, in addition, please feel free to call our helpline where you can talk your worries through with one of our team, the line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000.

You may also find the BCC Resource pack useful, here’s a link to more information and an order form, it’s been designed to aid anyone newly diagnosed:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/82/

Take care
Lucy

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Hi

Sorry that you have this worry on top of your diagnosis. I am assuming that the biopsy came back as cancer. Some hospitals do automatically do further tests others don’t. Try not to be too hard on yourself for not going to the doctors sooner. I found my lump at Christmas and it took me until march to go to my gp. I completely understand that your head is spinning now and it will take a while before you come to terms with things and have all the information needed to move forward. This is by far the worst bit, where you do not know what you are facing. For now get all the help and support you can. Talk to your breast care nurse, phone the bcc helpline, post on here and most of all get support from your family and friends. Be kind to yourself, you are not alone. Dx

4

hello.

i hope this may give you some comfort, i felt a thickening about a year before my dx ( i thought it was the menopause ) my cancer was still graded as early bc and i did not need chemo just WLE and rads, i am now 3 years from dx and have been discharged from the onc just regular mammos now. This site gives great comfort to everyone and bigs hugs to you.

Annie
x

5

My onc said my lump was probably growing for about 2 years before it was picked up - so a couple months isn’t very long in the grand scheme of things. Try not to panic too much - the scans for secondaries are pretty standard.
finty xx

6

Thanks everybody - I was only diagnosed yesterday so my head is just spinning.
xxx

7

I gather the scans are pretty normal. What may differ is the way they are described. When my wife was diagnosed in June, she was sent for a CT scan. The line we were given was that as she had opted for chemo first, they wanted as much info as possible before starting treatment.

We were quite pleased when it came back clear.

I think the docs like to know early on if thre are secondaries to better plan treatment.

Paul.

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Hi Seafarer. Sorry you had to join this group. You are in the period that is really hard, when you don’t know what you are dealing with yet and you don’t have a treatment plan yet. Things really do look better when you have more info and especially when you get started on treatment.

As others have said, the three months is not a worry in itself. My wife’s tumour turned out to be 25mm (once they had removed it) and when I did the research I worked out that it had probably been growing for up to 8 years to get to that size, even though it was grade 3 (the most aggressive).

This really is a scary time for you, but the doctors really do know what they are doing.

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Hi Jansman

Just curious where you got info that it could have been growing for up to 8 years prior to dx. My cancer was 21mm and grade 3, and my bcn said that it was probably caused by my 2nd pregnancy 18 months earlier. Now im wondering if it could have been my 1st pregnancy 5 years earlier?

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Hi Seafarer

When I was diagnosed I had a CT scan and bone scan to eliminate secondaries. I was given the impression everyone gets this, as it helps to plan treatment such as chemo/or no chemo. Surgery before or after chemo etc.

Primary or early BC is any breast cancer that has not spread beyond the lymph nodes in the armpit.

Hope all your news is good news (or as good as the news can be). The journey is c**p but do able and do it you will as we all have. There are positives, it is important to find them if you can. My biggest positive was my friends and family.

Love to all
Marian
xxxx

11

Hi Seafarer

I also had had the lump awhile before I went to the doctors. I was in denial to begin with and then wanted to leave it until my eldest daughter was home from uni, being a single parent I didn’t want to be ill with my 2 girls at different ends of the country. My lump was 3cm and everyone asked me why I hadn’t come sooner which got me really worried that I had left it too late but had a very reassuring chat with my bcnurse who emphasied that it was not the size of the lump and to wait for the biopsy. I cried most of the next week, and hardly slept at all but luckliy for me it was a grade 1. This waiting time is the absolute worst, once you have the result you know what the plan is. For me this was a WLE, lymph clearence and I am coming upto number 3 out of 6 chemo. It’s not easy, but is doable. I look at it as being on a treadmill that I will get off by Xmas, roll on 2011.
I hope for you that it is good news and once you have a plan it does get easier. Also this forum has helped me so much, It’s really makes you realise you are not alone,
sending you hugs,
Ali.
x

12

G’day matey,
Sounds like you and I were getting the bad news at the same time. I also was in so much shock. My Gp told me that it was most likely to be cysts as I had a few lumps and they were really painful. I do not have any breast cancer in my family and I am the size of a house. I have been on lots of hormone treatment to stop heavy periods and side effects of those drugs were breast tenderness etc. I have also had my lumps for months, I think it was before xmas. I had my mammogram first, then went in for the ultrasound and when they said they were going to take a tissue sample, I thought it was just because the cysts had hardened and they couldn’t drain them. I really didn’t put 1 + 1 together. I saw the consultant next and she said, ’ you’ve probably guessed that we have found something?’ but I had no idea! I still didn’t believe it as she told me I have 3 lumps! She just said that she knew it was cancer without the results and that I will need a mastectomy. I am really worried about the lump in my armpit. So Kiddo, I really and unfortunately know how you are feeling too. It looks like this site may help us mate. So hang in there and I’ll look out for your postings in future. Take care. xxxx

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Hi Seafarer

I had been able to feel the lumpiness of my breast for 4-6 years until a lump in my armpit made me go to see my GP again … and yet my cancer was still at an intermediate stage (stage 2 grade 2), so while early diagnosis is great, don’t beat yourself up or expect the worst because of a time lapse between finding the lump and going to the GP. If my GP had sent me for a mammogram the first time I mentioned the lumpy breast some years ago, I may have avoided chemo and MX, but then again I may not … just take a day at a time.
Best wishes,

Jacqui xx

14

Thanks everybody - this has helped me so much. It’s only been 48 hours since my diagnosis so I’m still reeling. It’s good to hear from real people with the same problems. I feel a bit calmer today than I did yesterday and I’m sure once I have a treatment plan it will all get a bit better.

Good luck to everyone else - especially the other lady who has been diagnosed at the same time as me.

XXXXX

15

Hi Lolly,

The information was from various sources, but there seems to a consensus around these. So, the rough figures I used were were as follows:

1 cubic centimetre of tumour tissue contains about 1 billion (US) cells. That’s 1,000,000,000 cells. I reckon the volume of Janet’s tumour was about 5cc, as 2.5cm was the longest dimension, making about 5,000,000,000 cells.

The tumour grows by cells dividing into two each cell cycle, starting with one single bloody evil cell (that really gets me), so the number of cells will be 2 to the power of the number of cell divisions. Now, 2 to the power 32 is 4294967296, so it should have taken just over 32 cycles to reach the size it was.

The general consensus seems to be that cell division takes place roughly every 100 days, so the time to grow to this size would be 3,200 days, which is 8.77 years.

Now, having read a bit more, it seems there can a lot of variation in the time it takes for cells to divide. It seems to be from 29 days to more than 300 days, with 100 being typical. In the 29 days case, that you reduce the time to 2.5 years, but that is at the end of the likely range.

I just found a good paper on the subject at:

breast-cancer-research.com/content/10/3/R41

On reflection, I think that, although what I said is correct, it is important to understand this background because the tumour does, of course, grow faster in the later stages due to the doubling. On the other hand, the constant doubling is probably the most pessimistic estimate because as the tumour gets bigger, cells in the middle start to die due to lack of oxygen. (Until the tumour is eventually able to build itself a blood supply - it really is evil this disease.)

So, the figures are all very rough, but I think the point is that we tend to think of tumour cells frantically growing, so that every day’s delay is important, but that really isn’t the case.

Sorry it’s so long and you probably didn’t want an essay on the subject, but hope it’s useful.

16

Hi

So sorry for you, I am on a similar path my journey started last Wed 15th, I am trying to go with the flow, but it is so hard, try and do one day at a time, thats what I am doing , or trying to.
This site is great,
Hugs being sent to you!
AX

17

Over 3 years ago I was diagnosed with a tumour approx 7.5 x 5cm. GP thought it was a cyst due to age but at the clinic they were able to tell me immediately it wasn’t (I just knew). I only had the biopsy to determine the grade, mammogram and ultrasound, a bone scan and a chest xray - for some reason I’ve never had a CT scan. These are all normal tests.

Unfortunately, it had spread to my bones and lymph but I’m still here to tell the tale, retired from work and loving life! I’ve adapted to a new way of life but looking back that’s no bad thing and I was lucky in that I could afford it.

I had 8 large doses of chemo followed by mx,anc and rads. After 4 lots of chemo, they did another ultrasound and it turned out there were 2 separate tumours that had grown to meet and that’s why it looked like one. The timescale can be daunting but it is do-able.

I hope this post is reassuring as that’s what it’s meant to be. As others have said, these early days are the most worrying.

Best of luck. Liz

18

I’m just about to finish chemo and was freaked out initially as my lump was measured on ultrasound as 5cm. I also had routine Bone/ CT scans.

Wanted to say though that what’s key is not the size of the lump, but what’s going on amidst it. So in my case the 5cm lump was mostly DCIS, with a section in the middle of more malignant cells of 17mm. It was the highly malignant cells in the middle that my Oncologist told me is what she’s concerned about, as DCIS is far less of a worry. In other words, large tumours don’t necessarily have to be too alarming. It really depends on how they’re made up. Even if all of your tumour is malignant, it still depends on grade/ stage, etc as to how aggressive it is. I really hope you get some more definite news soon. Looking back, by far the hardest part is not knowing the full picture. You can get through this though. If I can, so can you!

19

Hi everyone

I now have a treatment programme, but still feeling a bit wobbly about it all. The cancer is quite aggressive and has reached the lymph nodes under my arm, so I am to start with chemo, then mastectomy, radiotherapy and five years of Tamoxifen.

All the scans for secondaries came back clear, so I am thankful for small mercies.

XXX

20

Has anyone refused the scans to check for secondaries?