Please help! I've lost my anchor

[Guest user]

Dear Lemongrove, thank you so much for the reassuring words of wisdom. You are right. I need to learn to take one step at a time - and NOT to leap to conclusions. Had a typically rollercoaster morning. Went for (my first ever) manicure and silently wept while the poor woman massaged my hands!! Then got back to find that the kind secretary had phoned back and told my husband that the results of the scan had NOT come in yet (you were right about that too!) and that it is quite normal to have these scans to get a baseline against which to observe possible impacts of chemo on bone density. I am going to take this as a good lesson in how to SLOW DOWN!
Thanks again. I am so bowled over by this site and the women on it. Best of luck with your journey too. Liviaxx

[Lemongrove]

Sorry one more thing, as I didn't answer the second part of your question, which was if you are diagnosed with stage 4 are you going to die. The answer to this is that secondary cancer is not curable, but that does not automatically mean that it will kill you.
(1) You could get run over by a bus, or keel over with something else long before cancer kills you.
(2) You could go into spontaneous remission - In 5% of cancer patients tumours disappear and do not come back (I know of two people where this has happened)
(3) Not all stage 4 cancer is terminal. Try looking up the phrases oligometastatic disease, and Anderson Cancer Centre. The Anderson Cancer Centre have found that by treating cancer aggressively before it has had chance to spread too much (under five metastases in one area constitutes oligometastatic disease), they have achieved survival rates in the region of 30% at ten years (I am actually in touch with a woman called Beverly who was treated by them for metastatic Breast cancer 21 years ago).
(4) Treatments like Cyberknife radiotherapy and TomoTherapy are revolutionising the way metastatic cancer is treated. By the end of 2011, four NHS Hospitals will have Cyberknife, and more will follow. As a result, medics will be able to zap mets as soon as they pop-up. This will delay progression, and the point when chemo is needed.
(5) Scientists now know how cancer cells spread around the body by manipulating the Lox enzyme, and they will soon have a drug that addresses this. If they can stop spread, cancer will cease to pose a problem.
Hope this helps reassure you.

[Lemongrove]

Livia, try not to worry. The fact that they are going ahead with your op suggests that they haven't found anything worrying, and are still planning curative treatment. If your CT scan had shown possible secondaries (and as you only had it yesterday, I doubt they have even looked at it yet), I really think they would have postponed your operation until after the NM bone scan - as many doctors think removing a primary is pointless when secondaries are present. Also, you yourself have said that the cancer in your lymph nodes is not palpable - so it is unlikely to have advanced.
I know it's hard, and frightening, but just try to take things a step at a time.

[Guest user]

Thanks Lemongrove.
As ever, the post brought something to freak me out. Had CT scan yesterday (what a weird feeling - felt like I was wetting myself!). Then a letter arrives today to say that I'm having an NM bone scan next week - day after my op is due. I'm trying to get my head around whether they sent this in response to something they found - they sent the letter yesterday. Suffice to say that my stiff upper lip is quivering a bit.
This is the bit that I can't get my head around. Reading this site, when they get to the bit that describes secondary breast cancer, one gets the impression that one is no longer trying to 'cure' it (if that is the right word) but to manage it. e.g. if I'm going down the route of just having palliative care, how long do I have (how long, I suppose, is a piece of string?). I feel like I have been lying to my children by maintaining a jolly front and telling them that it is totally manageable. If it is curtains, when do I tell them?? How can I tell them?? God I feel terrible.

[Lemongrove]

There are pro's and cons as to whether to accept neoadjuvant chemotherapy. For many people, having chemo prior to surgery means they can get away with a lumpectomy instead of a mastectomy, and of course it reduces delay. However, if you decide to have chemo prior to surgery, the fact that you have lymph node involvement may lead your medical team to conduct various scans before commencing treatment to determine whether there has been spread beyond the lymph nodes, and to provide a benchmark to compare subsequent scans and the success of treatment . The problem with this is, that if your medics discover that your cancer is stage 4 instead of stage 3, you may find it difficult to get surgery or chemo, as many doctors feel there is no purpose removing a primary when secondaries are present (although there is strong evidence that removal of the primary is beneficial and many more are operating now), and they may also decide that it would be more beneficial to keep chemo in reserve (especially if your cancer is hormone receptive).
I don't want this to worry you, because as you rightly point out, the fact that the cancer in your lymph nodes is not palpable probably means it has not advanced beyond the lymph nodes, but I just wanted you to be aware of the possible implications, as a similar thing happened to me. I am actually stage 4, and have had a mastectomy/lymph node clearance, chemo, rads etc, but when I was first diagnosed my doctors thought I was stage 3 like you, and wanted to do neoadjuvant chemo, but this would have involved scans. My doctors pointed out that if the scans showed spread, I would just receive palliative therapy. As a result I refused, and so had the treatment described.
Consequently, before accepting neoadjuvant therapy, you may like to ask if this will involve any scans of areas other than the breast, and if the result of these scans would have any impact on the treatment planned.

[Guest user]

Dear all,

I just wanted to thank you for all of your reassuring comments - I think it's amazing that you take the time to help others like this and hope I can do the same further down the line. I did previously post a thank you but am struggling to get to grips with the technicalities - so I hope that this all reaches you. xx

[Guest user]

Hi

I was dx with lobular. In 4 places and, as it turned out, in 4 of my nodes. Er+ grade 2.

I thought id share my experience about the order of things. Once I knew that chemo and a mx were on the cards I asked if I could have the chemo first; my reasoning being that I thought I'd cope better psychologically if I was still in tact during this period. I felt that on the dark days I would feel worse because I would be grieving the loss of my breast. This was agreed to be viable.

So, my last chemo was in April and I had mx + recon 3 weeks ago.

On the plus side for this order:
- My lumps were very obvious which meant that they could be seen to be shrinking - a real boost whilst taking the medicine.
- I only had 1 thing to cope with at a time, both mentally and physically.

On the downside, because I'd become pals with people on here when we were all beginning chemo I did feel as if I was starting again as they'd all had their mx/ops first.

Interestingly, my BCN told me (post op) that the 'chemo first' approach is now seen to be the best way to do things in the USA, which is now trickling into the uk's thinking.

Hope this helps with your choice. Best of luck x

[amber32002]

Hi
Similarish - 2.3cm grade 3 lump, HER2+. They have done chemo first with mine, because they wanted to see how it responds to chemo. Luckily it is responding. And it means I can have smaller surgery if I'm lucky. I've still got the surgery to go, but it's been doable.
It's quite difficult to get odds of less than 80% even if it's aggressive and in the nodes, so don't despair. And don't Google - there's such rubbish out there.
Ann x

[josyemarie]

Hi Livia, I was diagnosed with a very aggressive grade 3 triple neg 2.4cm tumour. It had gone to one node and was so full of vascular invasion it was off the ricther scale. I had chemo and rads and am nearly 8yrs clear - and there was nobody more surprised than me when I sailed through my chemo! Big hugs - with all the treatments we have nowadays a breastcancer diagnosis is not all doom and gloom.
Josie x

[Anthi]

Hello again Livia47

I think you and I were posting at the same time. When I pressed 'submit' yours appeared just above and I had to try again. Good to see that you're logged on.

I forgot to say that my tumour was also Grade 3.

Take care - Anthi x

[Anthi]

Hello Livia47

As someone else has said we all have slightly different diagnoses but I understand how you feel. When I was first diagnosed I was anxiously comparing myself with other ladies for quite some time.

I was diagnosed in December 2006. I had a smaller lump than yours - 12mm and 2 positive lymph nodes. I was treated with WLE, axillary clearance, chemo, radiotherapy, a year of Herceptin and am now on Aromasin.

I wish you lots of luck with your surgery and will keep my fingers crossed for the results. Once they - and you - know exactly what you are dealing with you will feel much better. As others have said, try to take it one step at a time. Let us know what happens.

Very best wishes - Anthi x

[Guest user]

Can I thank you all for posting such supportive comments? I really do think that this forum is amazing - and it is so heartwarming that you all put in your time to help people at an earlier stage. I am sincerely hoping that I'll be in a position to help other people in my turn.

I'm learning to not leap to conclusions; to accept that everybody is different and to trust my marvellous team. Can't believe that I'm going to be having this op just two weeks after first going to the GP. They are doing a whole body scan the next day. Again, trying VERY HARD not to leap to negative conclusions about the speed of this - just grateful that by the beginning of August (the next point at which I reckon I'll go completely bananas!), I should (?) have a a slightly clearer idea about what I'm dealing with. Just dreading finding out that I've got secondaries too but am learning to understand that this doesn't necessarily (?) mean curtains!

xxx

[Guest user]

I was dx in June 2009 at age 44 with lobular bc. 5.5cm tumour. Itvwas thought by my team that 1 or 2 nodes were affected (based on clinical exam and ultrasound). I had chemo first to shrink the mass - lobular doesn't present as a simply defined lump and is therefore harder to detect and to operate on sometimes. This was a choice I was offered and I decided to have the systemic treatment first to arrest any rogue cells too small to be picked up on scans. Also I reckoned I'd either be able to see and feel the chemo doing its shrinking job, or not...in which case I suppose my regime would have been switched to another.

The mass did shrink considerably after 6 months of chemo but I still needed a mastectomy. I'm slim with small/ average assets and a wle would have been tricky. Also had axillary clearance which iscwhen the bombshell hit. 16/18 nodes were affected.

The good news: I got over that shock. I got over the mx (easy compared to chemo - was driving again after 10 days). I'd previously got through chemo fairly well too. Yes it's horrid but you cope because there's no choice. I have 4 children. It wasnt always easy. I got on with 15 x rads to chest/ armpit/collarbone. Slightly pink skin at the end but nothing more than that.

I worked hard to regain my fitness; I'd always been active and healthy so the dx was a big shock. Today I walk lots, I cycle, I play tennis and although I don't know what the future holds, so far all my scans and investigations have been clear.

[Guest user]

Hi Livia so sorry you've had to join us
mine isn't the same as yours but im sure you'll soon have many of the lovely ladies here posting who are in simular situation.

Do give the helpline a call they will be able to help you with alot of questions. I too see my SIL who was diagnosed 2 years ago go through the mill so I did have an idea about BC & what might be involved, still doesn't prepare you for that shock that hits home when you are diag. Take each day as it comes & try not to look to far ahead.

keep posting take good care
Hugs
Mekala x

[DJ007]

Hi Livia47

Really sorry that you've had to join this club, however I'm sure that you'll find it a source of kindness, information and support.

At this stage your head must be in a whirl. The important thing is to take a deep breath and take it one step at a time. I can't comment on your specific situation - my dx was different. I'm sure someone will be along soon whose experience is closer to yours.

However,it's unlikely that there is anyone else with exactly your diagnosis, this disease is very individual - and until you have your op and they run the full histology on your tumour and lymph nodes your exact dx won't be known.

I do know that there are plenty of people who have chemo first, then their op and the other way round. And don't worry about the debate - that's why they now have multi-disciplinary teams that discuss every case - so that you get a considered treatment plan. Your treatment plan may also alter as they get more info - you really are at the start of a journey.

The best advice I can give you is to jot all your questions and queries down - no matter how trivial you think they sound - and then give your BCN a call. If she doesn't know the answers, she'll be able to find out for you.

Sending hugs.
Dx

[poppy333]

hey

sorry you've had to join our club, im sure you'll find loads of support on here.
one thing i found that was everyone was different, id find someone i thought was the same and the treatment or something else would be different. but we all support each other in the same way. . we all feel the same worries, concerns, questions, and ups and downs

your not alone xxxxxxxxxxxxxxxxxxxx

[Bunny3]

Hi, Livia47,

Firstly I'm sorry you have a reason to post on this site. There is a great bunch of people on here that are really supportive, so keep posting.

I am 35 and my diagnosis is similar to yours the tumour was smaller at 1cm, grade 3, 2/22 lymph nodes contained cancer, I had a WLE and all the lymph nodes removed. I have just completed 6 cycles of chemo and have had a week of rads and have 2n half weeks left of them. The cancer was also HER+++ and ER+ so I am also having a drug called Herceptin for a year and Tamoxifen for 5 years.
My medical team made the decision to remove the cancer first then I had all treatment, different medical teams have different ways of treating each individual, I'm sure your medical team will do everything to treat you the way that they see best.
I understand your head must be in a complete whirlwind and it takes time to get your head around it all, but just take one step at a time, try not to google as there is a lot of sites on the web that give wrong information try to stick to sites such as this one and cancer research uk.
Keep posting on here it really helps and there is a lot of great people with great support and advice.

Take care

Donna xx

[Guest user]

Hi livia
It really is surprising what we manage to deal with and then the little things that are the final straw.

I had my chemo before surgery because my BC was very aggressive and in my lymph nodes. They needed to do the chemo first to reduce everything to help the surgery be more successful. I then had rads and a year of Herceptin.

This all happened nearly 3 years ago. At DX I really thought that I would not see another christmas, but I am still here and hoping to see many more. Life is different but we have adjusted to a new normal.

You have seen your friend go through BC treatment so must have a good idea of what is to come but if you want someone else's experiences just ask

Take care

Andie

[Guest user]

Hi Livia47 I'm sorry but my experience is not a bit like yours but I do understand your need to compare with someone on a "like for like basis" if you see what I mean. This post will bump yours up. Good luckxx

[Guest user]

Hello all,

Been through a bit of a whirlwind, having discovered lump less than two weeks ago, been biopsied, mammogrammed and had ultrascanned a week ago - basically told at the time, but confirmed yesterday that I have a grade 3 cancer which is in my lymph nodes. I must say, though, good old NHS!

Desperately trying to focus on the positives, I am hoping (speculating!) that, as the lymph node thing wasn't detectable manually (picked up by the radiologist), it MIGHT NOT be too advanced in there?????

Two queries. The first is that I'm due the op (excision of tumour and lymph nodes) - in just over a week - THEN the chemo with possibility of body scan. However, there seemed to be some discussion about whether it should be chemo then op or vice versa. Anybody got any idea/experience of these options. I HATE knowing about options because I'm now thinking OMG, what if they have got down the wrong route. i.e. should they just be blasting me with chemo asap and leaving the offending material in there?

Secondly, I had a grounding 'keystone' in the form of a friend who went through this last year. I had been coping really well - very stiff upper lip, focusing (not least for my 5 kids - I'm 47) on how manageable, treatable etc this is because she had gone through exactly the same thing. The MAD thing is that I wasn't so fazed when they told me it was in MY lymph nodes. What seems to have made me fall apart is learning that it wasn't in hers. I feel like I've lost my reference point.

Is there anybody out there who has had a similar experience - AND (obviously!) COME THROUGH???? i.e. a medium sized (3 cm) grade 3 tumour, in lymph nodes etc who can give me some words of comfort?? I know it probably sounds mad. I'm not minimizing how devastating it is for everybody (i.e. going down the 'my lump is bigger than your lump' line!). Perhaps everybody gets reassurance in different ways. I just need to normalise it all again - i.e feel that I'm not having a particularly awful diagnosis here.

Please help!

xxx