Hi KQ,
Thanks so much for your reply and kind words.
Blimey your lump was really small. The radiologist seemed to think Rosie’s was about half an inch (12mm). He couldn’t see any initial signs of spread to the nodes but the results will of course pick up anything that the scan didn’t.
I’m obviously pleased that like yours my wife’s tumour is very small because I guess that means there is good chance that it was caught very early. Because my wife is pre-menopausal I guess she will almost certainly be offered chemo and rads. What you’ve said about chemo does give me heart that it won’t perhaps be as bad for Rosie as we think it will.
Thanks again,
Bob
Hi Bob,nothing I can say that others already havent only that your support is so very valuable,my hubby sounds very much like you,i know from friends that he has cried buckets when im not around but hes so strong for me,keep strong for your wife,most of us ladies having treatment or have already gone through treatment find a strength we didnt know we had but with suppport like your wife has she will come through this too.Best of luck to you both,
Love Di.x
Hi Bob,
As with Di, there’s not much I can add that others haven’t already said - once Rosie has her treatment plan it will get easier.
Regarding checks to see if it’s spread - if her lymph nodes are clear she may well not have any further checks. If she has positive nodes then any combination of MRI, CT and bone scans would be usual as X rays don’t necessarily show the right things - I had CT and bone scans, thankfully both clear. And yes, you’re right, waiting for the results of those is awful!
I’m almost two years down the line from diagnosis now - DX 15th December 2010 and op Christmas Eve, chemo January - May 2011, rads June.
When you come out the other side, if you’re anything like a lot of us you’ll have a rather different outlook on life. Yes, life will never seem quite as safe and predictable again, but from my point of view at least, I’m glad to be alive and intend to make the most of it - the world is such a beautiful and wonderful place once you’ve looked over that horrible cliff and been able to come back again.
All the very best to both of you for tomorrow.
Jane xxx
Hi Bob
Sorry not to reply earlier, I’ve been out all weekend gallivanting - walking the dog with OH, spent the day yesterday out on my Harley doing a motorbike training course and had a complete blast. Just thought you might like to know there CAN be life after a cancer diagnosis, though it might not feel like it right now.
I was 48 when diagnosed with a 13mm IDC tumour, which was removed Jan 2011 and I’ve not long finished a year’s worth of Herceptin, but your post brought the biopsy and diagnosis time right back to me. First of all, your love for Rosie absolutely pours out of your post, and quite brought a tear to my eye!
You’ve seen explosions on the telly - you know, when there’s a mushroom cloud building but the noise hasn’t even been heard. That’s the stage you’re at. Your whole world feels as if it’s been blown apart, but as yet nobody else knows, and you are picturing the worst. Then the cloud builds, the bang is heard by others, all the dust and rubble starts landing and you just don’t know where to put yourself. That’s what happens next, as you’ll have lots of appointments, lots of new information, lots of questions and you will probably be completely overwhelmed with it all.
But look forward 2 years from that bomb going off, and you’ll see the bomb site has been cleared, the repairs have been done, and there’s a new building in the place of the old one. That’s where I am now. The whole experience was exhausting, both physically and mentally, but with the help of so many, I did manage to get through it. I had plenty of medical experts to deal with the medical stuff and lots of friends to keep me going. Like the bombsite, the surgeon cleared the area, the oncologist and radiographer decontaminated it, and my friends helped to clear the site, leaving me and my family to rebuild. I REFUSE to say that what I have now is better, but I managed to get through the whole process. What I have now is different from what I had in November 2010, before my own personal bomb went off in December 2010. My life won’t ever be the same as it was, but I have a “new normal” that I’m getting used to. That’s where you and your lovely wife can look forward to.
One thing I would say though, don’t try too hard to hide how you’re feeling. You are allowed to admit that your scared, that you feel out of your depth. And so is your wife. You should take care that you don’t both put in so much effort “putting on a brave face” for each other that you aren’t able to be honest with each other. I found that right at the beginning (where you are) I went into my bedroom to have a massive pity party. My daughter came in, and we both had a massive sob and a huge cuddle, and it felt better for both of us to let it out. From there, I determined to find out as much as I could about what I was facing, so that I could deal with it and find my own way to cope and support my family, who were then able to cope and support me, knowing I wasn’t hiding anything from them.
We ALL know what you’re feeling, and we’re here to hold your hands, both you and your wife.
Sorry for the rambling, but I hope you get the idea.
Back to your specific questions, your wife’s doctor will have tested the cells from the biopsy to see what you’re dealing with. The ultrasound will have given them an idea of the size (12mm IS a small one, honest!) though they will only give a definitive size once it’s been removed. They will test to see what type of BC it is, as there are many different types. The most common one is IDC, Invasive Ductal Carcinoma, which I think is about 75% of all BCs. (Could be wrong, but the Publications section on here has some very good leaflets.) They will also test to see whether the tumour is over-expressing hormone receptors. They look at Oestrogen and Progesterone, and give a score out of 8, where 8/8 is strongly positive and 0/8 or 1/8 is negative. Something else they look at is how different the cells are to normal cells. GRADE 1 is where the cells are slightly different, up to Grade 3 where the cells are most different from ordinary cells. Grade 1 tends to be slower growing, Grade 3 tends to be faster growing (that’s what they mean when they say “aggressive”) but Grade 3 also responds better to chemotherapy.
Don’t confuse the words GRADE and STAGE. GRADE talks about how the cancer cells are behaving, STAGE refers to size and location. There’s another good leaflet in the Publications section that will explain all about GRADE and STAGE.
They might also test to see whether it over-expresses a growth factor known as HER2. About 25% of tumours are HER2 positive (mine was). That test takes a while though, so don’t fret if they haven’t tested it yet.
Depending on what they find out, they will put together a treatment plan specific for your wife. Some people have chemo first, particularly for a large tumour, others have it after surgery, while others don’t need chemo at all. Same for radiotherapy, they will decide what your wife needs based on how SHE is, there isn’t a single treatment path.
For surgery, they may want to perform a Wide Local Excision (WLE, also called Lumpectomy), where they remove just the tumour and a clear margin of unaffected tissue around it. Not everybody has a mastectomy, so she may not lose her breast. At the same time they often perform a sentinel node biopsy, where they take out the first nodes in the armpit to see if it has started to travel. Depending on where you are, they may be able to test the sentinel node while your wife is still anaesthetised, which means they can decide whether more nodes need to be removed without the anxiety of waiting for results. Some people have to wait for those results though.
When they have removed the tumour they can test it thoroughly, and give definitive results for possible treatments.
Depending on grade and size, they may or may not offer chemotherapy. Some women don’t need chemo, because it would be over-treating the disease. And there are lots of different types, depending on the individual. You will both get support on here from people who have been through the same treatments.
Another treatment in the armoury is radiotherapy. I had it, but I know some who didn’t because again it was felt to be unnecessary. Your wife’s treatment team will discuss it fully with you. If it’s needed, it is usually given after surgery (and chemo, if it’s needed).
If she is Er+ (Oestrogen positive) then hormone therapy such as Tamoxifen is a possible treatment, usually after chemo (if necessary) and/or radiotherapy (if necessary). There are other things they might suggest, such as Zoladex, which temporarily disables the ovaries. Not quite sure what that’s about, but if your docs think it’s a suitable thing for your wife, they will explain it all. I’m not a doctor so can only speak about what I’ve learned in my own treatment.
If your wife is HER2+, they may suggest Herceptin, which is given every 3 weeks for a year. The biggest hassle I had from that was the disruption of my day having to go there, I had no side-effects that I noticed.
As you can see, there are LOTS of things they can throw at this, and they will discuss all the options thoroughly with you. Your wife should also be assigned a Breast Care Nurse (BCN) who will be available for any questions you might have that you don’t think to ask.
I suggest you make a list of questions that you want to ask. Write them on a paper as you will almost certainly forget some otherwise. You may even be able to ask the doctors if you can record the conversation so you don’t miss anything in the trauma of it all. Either that, or take copious notes so you can take it all in in your own time.
Take your time telling people. Get your own heads round it first. There’s no hurry.
Finally, have an extra special hug for both of you. Come on here to share your fears and worries, and we will listen. We might not have answers, but we won’t judge either. And you don’t have to “be brave” with us either - it’s OK to NOT be brave sometimes, and that “be positive” message can safely be ignored if you really don’t feel up to the happy clappy positivity nonsense.
OMG, I’ve written another flipping book…
CM
x
Hi ChoccieMuffin.
Wow, that’s some reply! Thanks so much for taking the time to reply so fully! I am REALLY impressed by your attitude and knowledge.
Right now I do not feel in the slightest bit brave. I’m scared as hell and I know that my wife is too. Poor thing. There is no justice. If I could I’d swap with her in an instant.
I reckon there is a good chance that Rosie’s cancer is as yours, IDC. It may well be the same size too if the radiologist is correct.
You have given me lots of good info and emotional support there and I really appreciate it. When I’ve got a bit more time this evening I’ll go through that properly. And I will definitely take a notepad to the appointment tomorrow.
Thanks again CM. It’s really nice of you.
Bob
x
Hello Bob and Rosie,
I know you want to be as informed as possible for tomorrow but I would try not to read too much info now or your brain will go into overload. Get yourself a nice drink and watch a DVD or programme you enjoy or listen to some inspirational music, anything that you both enjoy. Maybe you could both take a diazepam in the mmorning to calm you. Take good care of one another , your specail love will see you through xxx Tracy xxx
Actually there is another question I’ve been holding on to and which I’d like to ask all of you lovely people.
My wife and I, despite our advancing years (I’m 47, Rosie is 40), have been trying for a kid lately. We met fairly late in life, fell in love and last year we decided that we’d love a kid. Why not? Let’s go for it! We’ve been getting excited about the prospect and look at other couples with young kids and we know we’d love to. Rosie would be a fantastic mother. We’ve been unsuccessful so far and are being tested for fertility. The results should be back in 2 weeks, about the same time as her op, probably.
The question I’m going to ask is - are there any of these drugs that DON’T rule out the chances of giving birth? Chemo, rads, hormone therapy, Tamoxifen, you name it, all bad for fertility. If she has to take Tamoxifen for 5 years then it’ll be too late after that anyway.
In these circumstances I could deal with no kid myself. My one and only priority is to do whatever it takes and for however long to get my Rosie back to full health again. But imagine the blow to her. Cancer and no chance of kids. Forget it. The timing is not just unfortunate it’s cruel. I wish I wish I wish we’d done the kid thing earlier. I will blame myself. I know. But there you are.
Sorry for plunging back to miserable again. What a mess this is.
Bob
Hello Bob
Oh goodness, the rawness of your feelings comes through so strongly. We all find our own way of deaing with a diagnosis of cancer and you and Rosie will find your own way too in time.
For now, my strongest piece of advice is to stay in your day. Don’t project about the ‘what if’s’. Just deal with what you have in front of you today. Worry is lke a rocking chair, it keeps you moving but gets you nowhere.
We are so very lucky to live in the UK where we have wonderful treatment options for breast cancer and all of it provided by the NHS.
I believe everything is given to us for a positive reason and for me, my cancer is just part of who i am. I may not live life as i did before but life is still full of richness and joy. There is always someone worse off than me, and every day I try to think less of myself and more of others. This is the greatest kindness I can give myself as if i think of others and what i can do, it takes me away from worry, self-pity and fear.
Cancer isn’t a walk in the park but it doesn’t have to be a solitary walk in a dark desert. Rosie will be offered so much love and support as will you.
It will be allright in the end. if it isn’t allright, then it isn’t the end.
Much love
Pixie
Bob - add the kids question to your list, even though you are not in the first flush of youth it may still be possible for them to egg harvest or use drugs that ‘put ovaries to sleep’ rather than kn*ckering them. Can’t promise they’ll say ‘yes’ but ask anyway, at least you’ll know then.
Hugs to Rosie and you, you’re doing great.
Hi Bob, sorry you and Rosie find yourself here. As others have said, this really is the worst place to be, with all the fears, all the “what ifs” and “why didn’t I” going through your head.
Once you know what it is you are dealing with and have a plan, it is more a case of taking one day at a time until some day you realise that you have come out of the other side and the world looks much better than you imagined it could have been when you got the diagnosis bombshell.
I had a small tumour (only 8mm it turned out) but with some DCIS (non invasive crap as my breast surgeon put it) round about it so when I hd my lumpectomy and they checked to see they had removed all the bad cells and got a “clear margin” of healthy tissue around it, I had to have a little more taken off to make absolutely sure.
So a lumpectomy (which you may see written as a Wide Local Excision or WLE) and then a re-excision. But no chemotherapy because I had only a small tumour and it was of a type called Tubular (which is relatively rare but still a type of IDC). It was a strongly hormone positive tumour (so they think that the cancer had been encouraged to grow by hormones).
Why I am telling you all of this is in relation to your specific question about fertility and babies. I am fortunate in that I already have kids, I am now 49, I was 47 at diagnosis and am two years down the line and enjoying life, but if Rosie has a similar diagnosis to that which I had - and she could well have as her tumour is small and may well not be in lymph - then she may not necessarily need chemo. While I am taking hormone blockers to protect further against recurrence, I was told that my prognosis even without these was excellent and my surgeon would have considered whether it was over-treating to give me these.
So, after surgery, without chemo which sometimes stops periods for a while, and without hormone blockers which make it inadvisable to get pregnant while taking them, I would have been able to have another baby if I had wanted. As it is I am taking hormone blockers for 5 years, but it may not be that Rosie needs to and - if by and chance her tumour does not respond to hormones, sometimes tumours can be “triple negative” and be treated with surgery/chemo and then active treatment is finished.
If having a baby is important to you, I would suggest you might mention it to the surgeon and oncologist in discussing a treatment plan, because, while it is obviously most important of all to treat the IDC effectively, I also know women who have frozen eggs before their treatment, in case their fertility is compromised for whatever reason. Had I not taken hormone blockers, my active treatment was over within 5 months of diagnosis. Hardly any time at all.
Even if Rosie does need to take tamoxifen or another hormone blocker, the surgeon may well consider her coming off it for a period of time for you to have a family. Not everyone who has hormone positive breast cancer chooses to take it in any case.
Thinking of you both in this difficult time. This really was the hardest part for me. But the love and friendship I found from family and friends, and new friends I met on here, have kept me going. There is life beyond breast cancer.
And please don’t feel you have to be positive all the time. My OH was so resolutely positive and upbeat that sometimes I wanted to scream (I know, how ungrateful am I?!) I would much rather he had let me know how he was feeling because we worry about our OHs too through treatment and men can be guilty of bottling things up rather, which isn’t good for you. I usually felt better for a good cry and, sometimes, someone to cry with.
Hang on in
MG
Hi Bob
I do feel for you and Rosie - what a wonderful relationship you have!!
You’ve had some good advice here - Choccie has explained it all wonderfully.
However, just another thought - I was DX in March 2010 age 62, took drug to shrink the cancer of 3.4 cm, so it reduced to 1.7. so then I had WLE etc. No chemo just rads, and drug for 5 years. This shows how different cancers get different treatment plans, so don’t get upset if Rosie’s treatment is different from someone else’s. It’s all designed for each individual lady.
The other thing that can happen is that the plan may change after each step - e.g. if the drug hadn’t shrunk my cancer then it have been mastectomy rather than the WLE. Again that is not a problem, it’s how this disease presents itself for each lady individually.
Write everything down at appts so you can get to grips at home cos you’ll both be all over the place to start with, get the Info Pack the clinics give out, make sure you know the name of your breast nurse - she’ll be at the end of the phone all the time for - use the publications section of this website, and let us all know how you get on on Tuesday. We are rooting for you both.
Finally - remember THERE IS NO SUCH THING AS A STUPID QUESTION AND THERE IS NO ‘RIGHT’ WAY TO HANDLE THIS.
MUCH LOVE
grumpy
Hi mary grace,
Thanks very much for your reply, I really do appreciate it.
I spoke to the doctor three days ago on the phone and he reasusred me a bit by reiterating that it was a small tumour and had been caught early, he reckoned/hoped/guessed. But because of my wife’s age - he said she was young to get the disease - they often recommend chemo anyway because the risks of recurrence are greater in younger, pre-menopausal women.
I’m confused though about Tamoxifen. I’ve read that it is used by some couples to BOOST fertility chances but also that you must not get pregnant while taking it as part of a BC treatment as it may harm an unborn baby! Eh???
I’m so glad, MG, that your lump was small and that you are doing so well. I’m really delighted to hear that.
I will talk all this through with the doctors tomorrow and hopefully we can find out.
Thanks so much again for all your advice and info.
Bob
x
Hi Bob
I won’t add to all that’s been said before but when I had my first oncology meeting (diagnosed September 2011) he said I needed chemotherapy and had noted my age (46 at the time) and asked me if I would be wanting children and if so they could harvest eggs before starting chemo. So do mention your desire for children and hopefully they can sort things out before treatment.
Best of luck to you and Rosie. I’ll be thinking about you tomorrow. Do let us know how you get on. We can offer lots more advice if it’s needed subsequently.
X
PS You made me cry with your love for your wife, which is quite an achievement because I barely cried even at diagnosis.
Hi Bob, in response to tumour size mine was 15mm so thankfully small. I am truly sorry to hear that Rosies diagnosis causes further anxiety for you both with regard to having children in the future, I hope the many posts will help. Please take each day at a time, be kind to each other and to YOURSELF both you and Rosie will be given the time to ask as many questions as you both need tommorow, I had wonderful breast care nurses at the time of diagnosis and even now theyre still fantastic fo other worries. You and Rosie will be in my thoughts tommorow.
Jo X
I had breast cancer diagnosed in August 2012, I have have 2 operations 1 to remove lump other to check lymph glands, happy to say it had not spread to there. Am waiting to start my radiotherapy next Monday 22nd October 2012. Although I was totally devastated to be diagnosed the treatment is as fast as it can be and hopefully the outcome will be positive. I wish you and your wife well tomorrow and try to be positive and together you will get through the treatment that she will require and come out from it stronger as a couple. All the very best for tomorrow.
Hi Bob
Just wanted to wish you and Rosie lots of luck for tomorrow and fingers crossed for the results appointment. As all the others have said, this is absolutely the worst time for you both. The waiting is almost unbearable. I was diagnosed in June this year with a 6cm area of DCIS and high grade C5 cells extensively across my breast (ductal carcinoma in situ) and was recommended to have a mastectomy. I had this and a SNB and was found to have minimal invasion into the first lymph node but not enough to require further treatments. I opted to have a prophylactic mastectomy to my non affected side due to strong family history. I was given temp implants to give some shape but I had a massive infection on my left side and had to have the left one removed. I am now left with a flat side. I’m 42 and divorced so feeling not great about myself.
I am now all clear from the cancer but awaiting genetic test results at the end of November which will open another can of worms then on to a reconstruction next year hopefully.
Your love for Rosie shines through and she is a lucky lady to have you by her side.
Sending you both warm hugs and lots of love. Will look out for the results.
Viv x
I just wanted to say to every one who has posted replies to me thank you so much. I am overwhelmed by your kindness and thoughtfulness.
Well, tonight is the night before the results. Rosie is being so strong. Her way is not to dwell on it but to carry on and, well, hope for the best. The truth is that SHE is helping ME through this by just being, in her own quiet way, so together. Of course underneath it all she is terrified and wondering what will become of us. My only regret with Rosie, and perhaps my only real regret in life, is that I didn’t meet her a lot sooner than I did.
I’m making a list of questions for tomorrow and doing my best to keep calm and strong.
Thank you again. I will let you know what happens tomorrow.
Bob
x
Hi Bob and Rosie, just a quick note to say good luck for tomorrow.
On tamoxifen and fertility, this is just one - albeit the most common - hormone blocker for hormone positive bc and I have seen it mentioned elsewhere tht it can boost fertility. Certainly I was told that it doesn’t stop you getting pregnant but can cause abnormalities in a foetus so I should make sure that I didn’t get pregnant while taking it.
That part is down the line but it is certainly worth talking to your wife’s oncologist and getting advice on the best treatment tans that which grieves you the best chance of having a family once treatment is over.
Thinking of you both
MG
Hi Bob
I think Zoladex is used to protect the ovaries, but I’ve had my kids already so that wasn’t an option I needed to explore.
As said, THERE’S NO SUCH THING AS A SILLY QUESTION. I know I probably read like I’ve eaten an encyclopedia for my tea, but before all of this I didn’t know anything at all about BC, treatments, prognosis, terminology, blah blah blah, so I had to ask questions. We’ve had all sorts on here, even down to whether you can wear nail varnish in surgery (the answer is no) so nothing is silly and nobody will laugh at you for asking what might sound like a really stupid question.
You mentioned it’s HER keeping YOU sane - yep, that’s fine too. There’s no simple answer, we all just get through it the best way we can. My OH is so laid back he’s horizontal, and he didn’t panic (or let me panic!) at all during the whole thing, for which I was grateful. He also didn’t do lots of hugs, cuddles and chocolate either, but that is his normal way and I think I would have been freaked out if he had done! I’m sure you and Rosie will find the best way for the both of you. Keep supporting each other as I’m sure you will.
Good luck, and I’ll be thinking of you both tomorrow. Off to bed now, as I’m back at the hospital tomorrow to finally have my portacath removed. (It’s what they used to access my veins during chemo and Herceptin, I was very glad I had it, but it’s not something you need to bother thinking about right now, just get those results over and done with first.)
Sweet dreams,
CM
x
Helle everyone.
Rosie had her biopsy results this morning. Well, she did and she didn’t. It wasn’t bad news but it wasn’t good news either.
The consultant firstly told us that the test came back as negative - no cancer cells found. BUT, BUT what he thinks may have happened is that the biopsy needle missed the lump. He isn’t 100% sure, maybe it is clear, but the thing is, my wife’s breast tisue is very dense and, unbeknown to me, they had trouble getting the needle in during last week’s core biopsy. It actually bent at one stage! It seems likely that it just sort of bent around the lump rather than entered it. He is still suspicious of the lump because it is a hard, irregular lump that looks very much like a malignancy to him. So basically they may have b*ggered up the biopsy and just tested clear cells that were around it.
Instead of having another biopsy as last week (and them missing again) he suggested we get booked in for an op to remove the lump and then do the biopsy from the removed lump when they can look at the whole thng and be absolutely sure. Now that’s fine, but the earliest date for the op is mid-November and then there will be a week to wait for the results. That’s a month more to wait.
In one way at least we didn’t get bad news (cancer, aggressive etc) and the consultant did reiterate that it was 12mm and had been caught very early. But as yet we have no real news and no plan and won’t have for four weeks.
Bob