I’m new here, my mum was diagnosed with Breast Cancer back in 2008, we got the news a week before Christmas that she know has Secondary Cancer in her Liver and in one Rib Bone. Both myself and my dad are absolutely devastated. I have read some positive threads on here which has helped.
We don’t know her course of treatment yet as her local oncologist has asked for a second opinion from the Marsden which has obviously left us even more worried. Does it matter on how long its left for before treatment starts? The doctors are doing an amazing job but the waiting around is the most difficult part and you want everything to happen instantly.
Has anyone been in similar situation or felt like everything should be happening NOW.
I don’t mean to sound pushy but I just want my Mum to get treatment started.
Hi Jen
sorry you have found yourself in this forum. I can only speak about my experience with bone mets (in my neck). It felt like it took ages to diagnose what was actually wrong (11 months) and once bone mets was confirmed you can feel like you are treading in treacle because I was passed from one specialist to another and it was another 4 weeks before my treatment actually started. I think it is important that they get your mum on the right treatment, and this is what seems to take the time. I did get terribly frustrated at the time it took to put together the correct package. I think in the big scheme of things the time it is taking to start treatment is very small - my secondary had been growing for a number of years before it was found but now I am on my treatment the tumour marker has dropped rapidly and is now in the normal range. you are not being pushy, you just want what is right for your mum, but getting a second opinion is actually a good thing because they will be able to develop together the best package for your mum. hope this helps
Tina X
I am so sorry to hear about your Mum, it must be an awful time for you all.
I can understand your impatience for treatment to start and I do hope your Mum gets an appt with Marsden very quickly so that treatment plans can be put in place.I would think that if the onc thought the cancer was very agressive he/she would have started some treatment, I think that the onc is trying to do their best by your mum and that’s why he wants a second opinion. I know it is very hard but try not to worry too much, could you phone your onc’s sec and explain your concern or is there a secondary nurse specialist at the hospital you could ask? Don’t forget the BCC helpline too.
I do hope that things will be as good as they can be for you. Please do keep us up-to-date. Keep using the forums they do help.
In addition to the valuable support you have here from your fellow users, please feel free to call our helpline where you can talk things through with one of our team. The line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000 and you are all welcome to use it.
Your Mum may find the BCC secondary services and publications helpful and you can read more about these here:
I’ve got both Liver and Bone secondaries. Bone was diagnosed with primary in June 2009 and Liver in April 2010. For me personally, Liver was more scary than the Bone. But after 2 kinds of chemo and Rads, I’m now on hormonal treatment and everything has been stable.
I agree the waiting is awful and we all want treatment to start asap so that the cancer can be dealt with. Lots of oncologists say that a few weeks won’t make too much differences. But that doesn’t stop us from worrying… It’s good to know however, that her local oncologist has asked for a 2nd opinion to make sure the RIGHT treatment is given.
Anyway, let us know if we can help with anything. Maybe just a listening ear at least…
I would just like to Thank everyone who has replied to my post. It means an awful lot that there is alot of support out there and Mum is not the only one going through it and that my feelings are normal.
You have so many questions in your head and then when you come to speaking to someone you forget everything. I am going to speak to Mum’s omcologist today and see if there is any updates. Like I said I don’t want to seem pushy but i’m sure they understand how we are feeling.
I know all treatment is different and affects people in different ways but did any of you ladies lose your hair second time round? My mum lost her time when she first had Breast Cancer but we wondered if treatment would react the same this time round. I know nothing is ever certain.
Also a question going through my head is how long has she got? If I were to ask I have a feeling the oncologist won’t tell me because everyone is different and they don’t actually know. Do you think its a question i should ask? I mean all your stories are so positive which gives me hope.
A good tip on questions is to write them all down before the appt. My mind goes blank, too!! Just been back from my own appt today and didn’t write one of my questions down and … I forgot to ask!!! Never mind, will save it to next time.
Don’t worry about asking questions and making demands when you go to appt, they’re there to look after us and I think we have a right to know what they’re doing to our (your mum’s) body. If you want things done earlier, be sure to make your worries and concerns known to them. They might understand how we’re feeling, but they’ve got lots and lots of patients, you can be left in the background if you don’t make enough noise!
Re hair lose. Does your mum know anything about cold cap?? It works for some. I used it twice. The 1st time my hair was thinned, but the 2nd time I went patchy. But it’s better than no hair at all!
Re how long has she got. I was told off by my oncologist for asking. So, didn’t get an answer anyway. Thought I didn’t have very long. But here I am feeling a lot better. (and there’re lots of other ladies with liver and bone secondaries on this site who have lived a lot longer.) Never imagined myself here today. So, no, I no longer believe in prognosis. New drugs are developing all the time, so there’s always hope. I have to say though, at the start of my Liver diagnosis, I would have never written the above post, so I can understand that it’s very difficult to keep positive.
Sorry to hear about your mum. My mum has secondary cancer in a few areas of her body. The thing that has helped me deal with it all and I think a lot of the other women (and men) on here who have a family member with Cancer is to talk to others on here. I talk to a few people who’s mums have got secondary cancer and it helps to talk about it.
You and your dad just have to be strong for your mum. It may help you both to write things down if it gets tough.
the hair thing may be scary if she does lose her hair - my mum did and it was awful seeing it but suprisingly it came back so quickly.
If you ever need a chat then we are all here. Be strong. Sending hugs your way and support to you all. xx Annabel x
Thanks ladies. Makes me feel so much better about chasing the hospital. They have been fantastic so far but now things have started to slow down I think it’s all started to sink in with us now and seems more real. When you have so many appointments for example they found a small lump on the 13th December, 14th she was in for a CT Scan, 15th was a Bone Scan, 16th they operated to remove the lump which was a lymph node, 20th we found out the cancer had spread then the 29th the letter was faxed for a second opinion. I seem so impatient but when everything happens so quickly I think you have so much to do backwards and forwards to hospital taking it all in then when things slow down you think hang on whats the cancer doing why she is waiting around. You want everything done like now or even yesterday.
Mum never tried the cold cap previously. She let it fall out and then when it got patchy she shaved it. She plans on shaving it if there is high possibility that it will fall out again. Does anyone know anything about the NHS Wig Scheme or know any good websites for wigs. She already has one but wants something different this time round.
My fiancée is not very understanding and I just don’t want to be around him. I love him but everything he seems to do or say is wrong.
On a positive mum said today “I’m not going anywhere yet as soon as get treat plan I’m going to fight as much as I can”
I just saw the last bit about what your mum said yesterday and good on her! That is exactly my mums theory! You’ve got cancer but you don’t have to let it rule your life! You fight and fight as much as you can. Don’t give up and think positively…not negatively! xx
Hi Jen and Tinkerbell, when I was diagnosed with secondary mets on my spine (23rd Deember 2009) it was a very scary time as the scans were delayed because of Christmas and I was sent home from hospital with enough morphone to not be here anymore, plus a large cocktail of gabapenti, amitriptyline, diclofenac and arimidex. I spent the holiday in shock, as did my 3 teenage daughters. However, as the scan results came in the results got more and more encouraging and I totally agree with your mums sentiments - that I am not going anywhere yet! My oldest daughter could not face the stress and moved out. she carried on with her A levels and is now studying medicine in Cardiff - a dream she has had since my forst primary diagnosis in 2005. My middle daughter seemed fine but towards the end of January I had a call from her tutor to say she was missing college. I sat down and had a long chat with ehr and everything came out about her worries that I was leaving them and she didn’t like seeing me not being able to do all the things I had done in the past. I absolutely think this forum is the best place for you family members to give each other support and share your worries. I am certainly not going anywhere, and I am almost back in the driving seat - having had to give it up because the higher doses of morphine made me a liability on the road!! I was inspired to join this forum after attending a breast cancer care day in Bristol and there I met women who have lived with this for years and years and they were marvellous people - an inspiration. It is really good that your mum is feeling positive, give her a big hug from me xx
Since joining the forum I have felt slughty better in myself as their is so many people that give so much positivity and most of you are actually going through it not the daughters and husbands, friends and relatives. Well that’s not entirely true we go through it with you but it’s not us getting all the nasty side effects and having it in our bodies. Everyone who has responded that is going through it is incredible.
It seems like you all have positive thinking I just hope it lasts with mum. Completed the DLA form today for her and we will wait to speak to the oncologist before submitting just hope that will give us a little positive news. Ok money isn’t everything but would help out with travel costs and essentials for mum.
Still waiting on treatment plan for mum we are all feeling empty at the moment and getting bit tetchy with one another because we just want to know what’s going on. Praying we hear tomorrow. Looked at the Trevor Sorbie website last night anyone else got any good ideas for wigs any recommendations?
i just want too say this too you all,
i know hair is very important too a woman, i do know that as maryannes went a few years back, but i just want too say its the person underneith that counts (sorry i know thats not a good way too put it but im sure you all know what i mean)!!! ive said this before and ill say it again when this c**p starts you sure know who your friends are and theres people now i would cross the road too avoid.
jen
our prayers are with you 1,000,000,000 wishes too you
love and wishes too each and everyone of you
wayner each day passed is one closer too a cure
Hi Jen, I am in a very similar situation to you, my mum was dx with secondary in her bone last year, several years after primary dx, and now has further secondaries in her liver and ribs. It is such a shock but it does get easier and you just have to focus on the positive things - if your mum is anything like mine, she won’t be planning on going anywhere for a while! I’m sorry you have been finding it hard to talk to your fiance - my husband has been as supportive as can be but at the end of the day it’s not their mum and there’s only so much they can say.
My mum’s going through chemo at the moment and has lost her hair and is feeling really tired and pretty overwhelmed, but you (and she) have to remember that the treatment is only temporary, and if it’s doing some good then that is all that matters. We are about to get scan results to see if the chemo has worked so fingers and toes crossed.
It has been such an incredibly difficult journey for us all learning to live with the secondary diagnosis, but hopefully one day it will just become part our lives and not dominate all of our thoughts all the time. Don’t know what stage you are at with wedding planning but I was planning my wedding last year and it really brought me closer to my mum and it was amazing having her be part of all the plans, so maybe once you know more about your mum’s treatment there will be things for the wedding you can do together - focus on happy things to look forward to whenever you can.
Thinking of you and hope your mum’s treatment plan comes through soon - the waiting is the worst part, soon you can get fighting this ******* disease!!!
P.S. I meant to respond to your question about whether you should ask the dreaded “how long” question. For me personally, I have never wanted to ask this because all that the doctor can give you is essentially a statistic at this point. They have no idea how well the treatment is going to work or for how long - I cannot emphasise enough that this disease affects every single person differently, and you have to look beyond the numbers and statistics and focus on *your* mum and how *she* reacts to the treatment. It is such a difficult decision, but I feel that I wouldn’t get any comfort from the answer - I feel like it would haunt me all the time, I’d be counting down to the “deadline” instead of being positive - so I have never asked. But if you feel you would find it helpful then don’t be afraid to ask, we are each just struggling to get by as best we can and there is no right or wrong way to deal with this! It is the not knowing that I am really struggling with at the moment, but I then don’t think the doctors know either, not while there are still lots of treatment options available. That’s my take on it anyway, for what it’s worth - I hope this helps in some small way.
God I completely agree with you Wayne! So traue about each day passing is one closer to a cure!
SnowyOwl2 I hear your daughters worries…i always worry that mum would never be here for my wedding (one day!) but then you have to not think like that. You have to be positive about it all - keep your hopes up, think positively (not negatively) and ride with it.
Jen where abouts do you live area wise? Because we live in Norwich and mum got a wig from a lovely lady.
Ladies (and Wayne!) we all have to be strong as daughters, husbands, mothers for each other. this desease isn’t getting any one of us…you have to fight it and think positively that you are going to be here for 10+ years. I always remember something someone said…We’re here for a good time, not a long time so enjoy it! Love and prayers to you all. xxx Annabel xx
Thank you to everything again for your wise and supportive words. Poenyroses thank you your words are so true and helped. I have all my fingers and toes crossed for your mum that the chemo has worked.
We are still waiting no news so far so I’m also keeping fingers and toes crossed that Mum hears something today before weekend is here. I would of hope the Breast Nurse would of called but still day is not over yet.
Its funny the talk of weddings made me smile both me and my fiancee got engaged two years ago and had planned to get wed 2012 in Cyprus. When the oncologist advised mum about treatment and the second opinion from a consultant at the Marsden she asked to see my engagement ring and plans etc. You automatically think why so many questions? Do you know something we don’t? But think we looked into it too much.
Tinkerbel _2008 I live in Essex, its just trying to find good but not so expensive wigs like I mentioned she does have a couple but would like something different second time round.
What a lovely saying too “We’re here for a good time, not a long time so enjoy it!” Your mum is very lucky to have you.
Does anyone know can you get the DS1500 form from your doctor or does it need to be an Oncologist?
I called the Breast Nurse after thinking about it for practically the whole morning and she advised she was going to email the oncologist and get in touch either today or Monday.
Mum got a phone call few hours later to say that the Marsden would contact her directly. So we are kind of under the impression that the Marsden will be now looking after mum. Obviously we are none the wiser on when we will hear but hopefully soon.
I am also under the impression that a treatment plan will be put into place after a consultation at the hospital.
Good news for the weekend that we know she has now got to wait for the Marsden to get in touch, even if I chase on monday its a positive.
Thought you might like to hear that we got good news from my mum’s oncologist - the chemo and herceptin have been working! Some of the liver mets have disappeared and left only scar tissue, the others have shrunk down and even the bone mets have improved. A positive start to the year! Thinking of you all and hoping you all get some good news soon too - sending happy, positive thoughts xx
That’s lovely news put a smile on my face for this miserable Friday morning. I hope your mum continues to do well and the treatment keeps up the good work. Fingers crossed for Monday for us.