Reasons:
(1) Was told in November 2011 that my scans showed NED, and so thought I was winning (even planned to have reconstruction). But that information was incorrect. In fact the cancer had spread to my spine (C2 and T12).
(2) Disappointed with Consultant. Was he being dishonest, or did he just not have the time to read the radiographers report/look at the scans himself? Also as it turns out they have suspected C at T12 since December 2010, why have they not changed my treatment?
(3) MY wonderful GP is giving up medicine (she doesn’t agree with GP commissioning, and didn’t go into medicine to be an accountant/ration treatment). I’m worried because I don’t know who will take over, and if they will care about their patients as much as she did (she even used to phone every now and then to check on me).
(4) So I now have two tumours in the spine which are resistant to FEC and Femera (so don’t know what the treatents are left), have a Consultant I’m no longer confident in, and will be losing a GP who has beed so encouraging and supportive.
Just feel utterly lost and alone.
Sorry to moan.
Hi lemongrove,
Sorry things are uncertain for you at this time. I’m a newbie but thought I’d send a big (hug) anyway.
Eleanor xx
You are SO entitled to have a moan. This is a blip and I know you will take charge of the situation and get a plan of action in place. Meanwhile give that baby lots of cuddles. Hugs xx
I am so sorry that you are in the position that you are. You must feel very frustrasted, angry and frightened but you are not alone. There are many of us out here in BCC cyber space whom you have given very good advice and support to, you have given so many of us hope and confidance. Now it’s my turn to send a hug to you and let you know that WE all care about you.
I know you’ll rise to this next challenge, but whilst you’re a lit low have a hug from me.xxxxxx
Lemongrove, my heart goes out to you. Its bad enough having this dreadful disease without all the other stuff that you are having to go through. I can’t solve these issues but I can tell you that whilst you feel alone you are not and there is tremendous support for you on this site - given the support and knowledge you have given us over the past couple of years.
You mentioned getting a second opinion, I would do that, given your disapointment with your consultant - you need to check that the radiologist is in fact correct and has read the scans correctly. You probably don’t remember but I was on the other end of misdiagnosis, in that I was told that I had bone mets when in fact after a second opinion I didn’t it was ‘just’ arthiritis. I do think (as you know) these scans are very hard to interpret and they need to compare with previous scans to identify changes etc before they can be sure. A second opinion would also give you the confidence you need to start any new treatment/regime that they suggest. Take care and lots of hugs xxxx
Hi Lemongrove
I am sorry to read that you are feeling so low, the helpline is open if you need a listening ear, it may help a little to talk things through with someone (0808 800 6000)
Take care
Lucy
Lemongrove,
You are NOT alone. We are all here. The news you’ve had is very disappointing. You should definitely pursue more 2nd opinions. It probably seems overwhelming at the moment as you had been thinking that you were NED but once you’ve had time to absorb what you’ve heard gather your strength, gird your loins and get into that fighting mode that we all know you have!
Meantime, you know you can get help, advice and support here.
Wandyx
Hi Lemongrove,
Oh no! so sorry to hear about the spread, completely understand why your feeling so low its bad enough going through the whole scan anxiety thing without them telling you incorrect information, why didn’t they see the new tumors??? sounds crazy to me, I mean what is the point in scanning if they are not going to bother looking at the images properly, of course your going to lose confidence in your specialist, sorry but this has made me so angry. I also understand the ‘Lost and alone’ feelings, you know your such a strong lady, you’ve given me and others such good advice on numerous occasions especially when I was first dx, you will come through this and you know we are all here holding your hand offering our support and understanding you are never alone.
When I was first dx my GP was a newly qualified lady Dr who was just fantastic (she used to ring me every week after I was dx just too make sure I was ok) after 8 months she left the surgery and all the other GP’s at the surgery are men! its such a shame your GP is leaving, can you get recommended to another GP by say one of your friends?
I’m waiting for a scan have been now for 6 months still don’t know what if any the effect of the rads has had on my lung mets, I’ve rung the hospital about this, seen my GP about this, spoken with my Oncs secretary about this and still no appointment date they just don’t seem that worried :0(
(((((HUGS)))))))
Sending you love and light to you
sarahlouise xx
Hi Lemongrove,
I’m sorry you’ve had such bad news, and hope all the cyber support makes you feel a little less alone. Remember that there are lots of hormonal treatments and chemo that you have not tried yet.
Love nicky
Lemongrove,
I’ve often read your amazing posts of advice to others on here.
I am gutted to read that your scans showed changes last Autumn and you’ve only just been made aware of this. Nobody would ever believe such mismanagement can occur, you must be feeling so down and frustrated. Why this has got to happen in this day and age is beyond a joke, thousands of us are implicitly trusting our doctors to manage our care with no short-cuts or mistakes.
I’m sorry I’ve got no words of advice for you, I just wanted to write that my thoughts are with you, you have amazing knowledge and I’m sure you will find the strength to march on forwards and not dwell on the what ifs and if onlys.
xx
Hello Lemongrove,
I’m so sorry to hear about your news & the mismanagement of your care. We tend to put our complete faith into our medical teams & presume they are constantly on the ball with our treatment etc, however this clearly is not always the case & you are rightly feeling confused & angry about everything.
I don’t have any magic words to say LG but I wanted to let you know that I’m thinking of you & hoping you get some answers quickly & also a new treatment plan. You mention that FEC & Femara have stopped working & are unsure what is still available to you - LOTS & LOTS!!! I’m currently on my 4th chemo & have been on 3 hormone tablets & when I saw my onc 2 weeks ago we discussed what options I still have left & there are plenty, so please don’t give up hope!
You are such a knowledgable person, who constantly offers words of support & encouragement to others when they are feeling low. Stay strong LG & keep fighting!
Dugsy x
Thank you all for your support and encouragement. I really, really appreciate it. It makes such a difference to know that there are people out there who understand how all this cr*p feels.
One of the friends I have made on this sight (Linda), kindly rang me this morning. My daughter and I (plus my little baby grandaughter, Poppy), went to Harry Edwards Healing Sanctuary for healing, and then stopped for a cream tea on the way back, so I’m beginning to feel less sad now.
When I woke up this morning I was thinking very black thoughts (one way tickets to Switzerland thoughts),so thank you all for your care.
Lemongrove you are one of the most helpful members here, even if I haven’t had to ask you myself, I see how you care about us all, I have read how you have helped women, especially those with SBC and how passionate you are about treatments and how you have driven the Cyberknife issue.
Seeing you say you are down is most upsetting because you always hold others up when they are down and give them practical solutions. There is nothing I can say to help you, but I want to remind you about that fight, drive and passion you have, even if it takes a knock now and again, it will be back…and stronger.
Sending you MIGHTY cyber (((HUGS))) in abundance.
Lisa
xxxx
Just want to send best wishes Lemongrove - and thanks for all the support and help you have given to your fellow forumites. Cyber Hugs and love - Diana x
Dear Lemongrove,
So sorry that you have found yourself in this position. Failures in your care plus the departure of your GP at the same time is hard.
Similar to you, I had EC for my primary treatment and then tamoxifen followed by femera, neither of which were effective for me, and have tumours on my spine (and a few other areas). However, since then I have responded well to Gemcitabine/Carboplatin and later to Abraxane/Xeloda, and I am now on long term Xeloda, so there are more options.
A second opinion and an oncologist you can trust should be your next move in my opinion, but please accept all the best wishes and encouragement from all our posts here to let you know that there is a future, and we are all rooting for you.
Kind wishes,
Julie x
Hi Lemongrove
I so know how you feel! Today was a good day as I was treated with kindness and empathy by medical staff, last week was just the opposite - don´t they realise we feel like they have our lives in their hands???
I found this site and it is really helpful I think…I hope it helps you
nccn.com/files/cancer-guidelines/breast/index.html#/100/zoomed
Lemongrove, I always read your posts, I love your politics and your approach to life. I am so sorry you’ve been feeling down. I think you have avery right to be pi**ed off, how could they have made that mistake! And not telling you they’d suspected the change from 2010! I am furious on your behalf. It is sad that GPs like yours are leaving - too many GPs just have ££ signs in their eyes. You fighting spirit is great - but you are absolutely entitled to a moan too, and with good reason. Take heart, Mo xxx
Hi there
I just want to echo what others have already said. You have been an inspiration in terms of your continous endeavours to source information and new treatments which will ultimately assist us all on here. This rotten, rotten bc (not really the words I want to use, but hopefully you get my drift) is so unkind.
I do hope that you get support, treatment and the care you deserve. Take care. Jayne.
Hi Lesley so sorry to hear your news it amazes me how they can miss these thing my onc never saw my nodes until I pushed for cyberknife like u know why don’t u get a second opion that may help can understand how down u feel but just remember how strong u are u fought before you can do it again get y strong head on and off u go big hug love Laura
Lemongrove - I just want you to know how upset I feel for you.Please don’t loose heart - there are alternatives to the treatment you have already had. I do sympathize with you - it is very hard to face a direct challenge to mortality when everyone else seems to be carrying on with their jobs holidays and just normal everyday activities.
You have a great talent for being informative, supportive, kind and objective all at the same time.
In your position I too would be wanting a second opinion - and a read of my medical notes!