been told "high risk"

[Mazzalou]

Great news. At least having the MRI scan has now given you peace of mind, Christine. Without it you would have been worrying needlessly, but now you rest assured.

[DJ007]

Excellent news!

[Lulu34]

christine that is great news about your mri.... think you need a wee celebration for that x

[3network3]

Had MRI spine result coming through the post last week saying bottom line of radiologist report was he thinks there is no malignancy there.

Thankful!

Ch xx

[3network3]

Funny you say "it is far better to go on the side of caution and investigate them, ... than to turn a blind eye and do nothing." as my onc was more than happy not to have an MRI done, it was just that I asked the nurse what they are going to do about it and she said i can have an MRI if I wanted, otherwise they just leave it. I preferred to have an MRI done. Onc keeps saying lesion is tiny and wants to reassure me, but just because it's tiny it doesn't mean it's not a met as it has to start somehow?! I feel onc turned a blind eye to it, it's me who is more pro-active. Maybe a good sign onc turns a blind eye? You had quite a scare with your cyst over a long time, not easy. But great it turned out to be just a cyst, what a relieve.

Christine xx

[Mazzalou]

I hope that your wife does realise that what you said makes sense Kevin as this is exactly my philosophy on life now. Knowing we have breast cancer means that we can have the correct treatment. Yes, life is precious - 5 years ago I watched as the paramedics that responded to my 999 call shocked my hubby back to life with a defibrillator after he had a cardiac arrest on our way to Papworth for his 12 week quadruple by-pass op follow-on appointment. He was in the driving seat and we were luckily stationery at traffic lights and the ambulance was there within minutes to save his life. He now has his own in-built defibrillator. Had he have been driving at the time then we both probably wouldn't be here today, let alone getting over breast cancer.

Christine - I do feel for you, and I do know how you feel. My cyst was picked up in June of last year, but everytime Addenbrooke's wanted to investigate it via an endoscopy my oncologist had to say that they couldn't as I was on chemo and not to risk invasive procedures. I finally managed to get this done in November, by which time Addenbrooke's then said that they would also like a 2nd CT scan done as it was 6 months since the 1st one. They then thought I had cysts on my liver so asked for an ultra-sound but because this was inconclusive they then requested just before Christmas an MRI scan. This meant a delay over the Christmas and New Year period before my MRI scan on January 3rd, after which they were happy that my liver was clear of cysts. I had my op on January 30th to remove the cyst that the original ct scan had revealed followed 2 weeks later by my results that revealed that it was just a cyst. And all the while this was going on there was still the breast cancer to get over!

Yes, you can go on just like me - remember that they are doing everything that is best for YOU and want to give you the correct treatment, but sometimes this does take time to decide upon. Unfortunately these cysts, lesions etc don't come with labels attached saying what they are, but it is far better to go on the side of caution and investigate them, and even remove them and then determine what they are after surgery and treatment than to turn a blind eye and do nothing.

Good luck and let's hope that you will soon know your results and have your mind put at ease.

Mazzalou xxx

[Guest user]

kevinj i just wanted to say what a sweet thing to say to your wife sometimes we forget about the family and what they are going through unf my situation is diff i was dx in march 11 with sec but wantes just to say kp living and enjoy things tc laura x

[3network3]

Just to be clear, I didn't ask my onc re recurrence, we just had a good general chat about my primary DX and she mentioned the high risk thing. I didn't ask the %, as I don't want to know this so exactly. I even haven't asked for a prognosis yet, but I will after the path report is back, I have a MX /ANC on wed next week.

Kevinj, you're right there are many people who don't know yet they have a serious illness due to lack of symptoms or whatever.

Mazzalou I also had a CT scan back in Dec, they didn't find a cyst, but a lesion on T9, bone scan inconclusive, MRI last week with no results yet. This all doesn't help to make me feel I go through treatment and try to move on. I feel in limbo about this lesion, that they can't tell me what it is.

The onc had a few positives to say too, like they had "cured" other patinets with IBC or (like I have read now from other people on the forum) she finds it more important that the chemo works well than what grade and size the tumour has.

Christine xx

[kevinj]

Sorry to but in on your topic, but I was driving my wife to work the other day and I said to her do you realise that you are the only person in this car and in your work place who knows she hasn't got cancer.
She looked at me as if I was mad then I explained the surgery had removed the cancer (her nodes were free from cancer) and the chemo Was there as back up.
I don't know I haven't got cancer I have no symptoms but neither did she, in her works there might be people (god forbid) walking round with cancer which has been undetected yet.
I was trying to say to her in my own way the cancer has gone she will be monitored very closely now for the rest of her life, life is very precious none of us know how long we have it has taught us both one thing (live life), I say both because without her my life is worthless anyway.

[Mazzalou]

I second Libsue's sentiments entirely. I, too, have always regarded the fact that knowing that I had breast cancer, and could have something done about it as a postive thing - not knowing was certainly not being blissfully ignorant.

Following on from my diagnosis I was privy to a CT scan which revealed a small cyst totally unrelated to breast cancer somewhere else. This was subsequently removed at Addenbrookes 2 months ago and was found to be nothing more than a harmless cyst, but now it is gone with nothing for me to worry about.

I will be under the NHS's spotlight for a long time to come and again this means that I will have piece of mind.

We have to consider ourselves lucky for our diagnosis, odd that this may sound. Many supposedly 'healthy' people are walking around with all sorts of undiagnosed conditions inside of them - some of which will only reveal themselves too late in life, and with far more dire consequences.

So let's do as libsue says and embrace life fully and live life to it's full.

[libsue]

My tumour was 5cms in size and metaplastic (rare and very little research done), I was told it was grade 3, stage 3, aggressive and invasive, but when I last saw my Breast Surgeon and Onc after my op they were hopeful for my future, so try not to worry ladies as size doesn't always matter and neither does grade/stage. Follow Revcat's comments re fear of recurrence and don't become paranoid. Trust your Onc, as Mazzalou suggested the NHS wouldn't spend thousands on your treatment if they believed you had little hope of surviving for more than a few years. If the NHS have hope, then we too should have hope. We've all had a wake up call, and I'm treating it as a positive to fully embrace life and dump any negativity, my plan is to live life to the full and move on from BC.

Libby x

[Lulu34]

Emma if your lump was in your breast then it wouldn't be a stage 3b hunny.... Even if high up in the breast unless the muscle or the skin was involved. Herceptin has no bearing on the grade or the stage.

IBC is grade 3b because of its involvement with the skin.... But not everybody with a stage 3 has a poopr prognosis.... My interpectoral lymph recurrence is considered a stage 3b as its within the pectoral muscle but iv been given an 80% survival to 10 years my onc says he was treating me curatively.

I also asked my onc about relapse and he doesn't really put much weighting on relapse stats as that includes local, regional, distant recurrence and new primaries... And that out of this the only life threatening one is a distant recurrence which isn't curable but can be treatable.

Lxxx

[Ninja]

I asked about my risks because I was refused a recon - the risk of recurrence was given as the reason for no recon, you see.

If I'm still NED (no evidence of disease) after 2-3 years, I'm then clear for a recon and getting on with things. I was told that my particular cells were very nasty - but the good thing is that *IF* they don't come back quickly, I'm in the clear for many, many years.

[cherub]

I just wanted to point out I was only told the stats on the chance of my cancer coming back during the 5 year remission period because I asked the Oncologist when I started chemo. At that point she told me the chance of it returning was "low to moderate, but not expected". When I finished chemo and half way through Herceptin her Registrar translated the low to moderate as "anything up to 40%". It was just something I felt I needed to know and I figured the low to moderate scenario was something I could live with. However, we are all different in our approach to things and some people may prefer NOT to know, which is equally OK. You have to just follow what is right for you as an individual and decide how much info you can cope with. I have a very pragmatic type of personality (OH is the same), so I preferred to have an idea of what I (we) might be up against.

[lottie63]

Hi ladies
I was dx with grade 3 IDC 3cm tumour with 3/20 nodes affected, ive had wle/node clearance and started chemo last week,

When I was dx and surgeon said grade 3 I was horrified and said thats bad isnt it such a high grade, he relplied we dont really go by grade but by how treatable the cancer is and this is very treatable, reading the posts am I being naive and was he just pacifying me as I was so alarmed ?, I know grade 3 is more aggressive , To be honest the way I look on it now is we have breast cancer and we will be monitored closely in future, I found my lump by complete chance as a year away from 50 so no mamo, so at least now I will be checked throughly for recur and regulary enough to make a difference , well thats my hope and you got to have hope x

Hugs to all

Janice x

[Mazzalou]

Hi Christine

I wasn't told any % chances and quite frankly I wouldn't want to know as they are only based on statistics - nobody can give you any accurate figures - let's face it everyday life is a game of chance. If you looked at road accident statistics you wouldn't even think about getting in a car. Quite personally, I wouldn't want to know my % risk factor anyway.

I agree with all RevCat's comments regarding statistics and worrying about the 'what if whys'.

As far as I was concerned the more treatments to guard against a recurrence the better so I opted for the 'Full Monty'. Breast cancer treatment is a costly business - my herceptin treatment for me being HER2+ alone costs more than £30K and I am sure the NHS wouldn't spend it if it didn't work.

[Guest user]

Thanks again for your reassurance. Just read the info on this website re stage- didst realise there was so much involved. Now wondering if i am possibly 3b as my lump was quite high up and possibly close to chest wall. My onc really didn't discuss the finer details and tbh i just trusted that the treatment i received was correct. So who know? Will possibly discuss at next meeting but not until Oct.

Hope you can get bit more info from your onc + hopefully feel a bit reassured.

Emma x

[Guest user]

wish i hadnt read this as scared now too. just want to get on with my treatment and not worry about recurrence. i could get knocked down by a bus tomorow who knows. i think i stage3 but thinking positive xx

[3network3]

Emma, small lump and only 1 node involved you should be fine, so no reason to panic!

Weme yes I have IBC, when onc said "high risk" I said "Why? Is it because it's stage 3b?" She said yes. So I'm not sure if every stage 3 is high risk of coming back or is it because of IBC? So many mysteries!

Christine xx

[Guest user]

Thanks Christine for your help. Still not sure what grade or stage I am (possibly should have asked more questions!). Small lump and 1 lymph node involved so thought was stage 2 + grade, I'm sure the 3b was mentioned somewhere (the b being her2). My onc did say however that they don't tend to use the classifications as there is more involved than just that. So clear as mud!!

Perhaps I will have to be brave and ask about the whole 'risk' thing.

Emma x

[cherub]

Remission - I was told by my oncologist this starts the day the cancer is surgically removed. I had a blip with this one as my original test results in the September came back clear and the cancer wasn't found until I went for day surgery the following month to remove a benign fibroid (the tumour was completely hidden underneath). I had to return to hospital 4 weeks later to have my lymph nodes out and it was found in 1 out of 23, therefore my remission officially started at the end of the October. (2006)

[weme]

Hii Christine

I think you have IBC which has a higher risk of retuning I believe, I may be wrong though. I have triple negative IBC which I think is a double whammy, both are more likely to come back but if I can get 5 years clear it is unlikely to come back.

Weme

[3network3]

Emma, my surgeon said to me he is "glad" I'm HER2+ as it gives him more treatment options. There is a difference between grade and stage, there is no such thing as grade 3b. You might well be grade 3 but stage 2 or 1? So don't panic! HER2 positive doesn't make my cancer high risk of coming back, but because I'm stage 3.

Love,

Christine xx

[Guest user]

Oh no,I really shouldn't have read this thread!

Hi ladies,

I was diagnosed with grade 2 (think?) changing to grade 3b as was Her2+ (plus ER+, PR+). Recently have finished herceptin and now trying to get back to 'normal'. Have never asked my onc about percentages etc, was far too scared to but now reading this . . . .

I always thought that having herceptin counter-acted the Her2+ and brought you back into line with the ER+, PR+ diagnosis but hearing this it doensn't sound like this is true. Scared now!!

Emma x

[Lucy_BCC]

Hi Christime

In addition to the support here you may find it useful to talk your queries through with one of our helpliners, the lines are open 9-5 weekdays and 9-2 Saturdays on 0808 800 6000.

Take care
Lucy

[RevCat]

Hi Christine,
I'm not absolutely sure, but I think the remission period Cherub mentions is five years. As far as I understand it, the majority of recurrences occur within two years, and once one is five years NED the likelihood diminishes significantly - but never goes away altogether (except if you are triple neg when I understand if you make it five years NED you can be considered cured).

Remember that even if you stats are rubbish, someone has to be in the good part of them, and it could be you. Also, don't let the fear of recurrence determine your lifestyle... be sensible of course, but not paranoid (not easy I know, but actually over time it becomes less all pervading).

As you know, worrying cannot add a single year to your life - but it might take off several if you let it! Take care and hope all goes well with your surgery and beyond.

[3network3]

What's the remission period? I didn't ask how much % the high risk is. I'm also HER2+, ER+. The other thing I'm wondering about, when they say high risk of returning, does that mean local recurrence or metastatic disease as well?

Christine xx

[Ninja]

I have up to 80% risk of a recurrence in the first 2 years.
Now six months post-surgery and still OK!

[cherub]

Hi, I was told up to a 40% chance of my cancer coming back during the remission period (Stage 3, Her 2 positive). I finished remission at the end of last year.

[3network3]

Hiya

Stage 3B and was told today that my cancer is high risk for coming back. How encouraging!! Anyone else told the same and yet is cancer free years later? Is this fairly common?

Christine xx