Im not sure if Im more angry, upset, worried or scared. I saw Onc on 18th July which is when I had to come off Ibrance for a week as wbc down. Went again week later and all was well again. During my visit on 18th, I reported - again - that my throat felt strange. She did an exam but just gave me some antibiotics 'to be safe' as my voice was a bit gravelly.
Well Ive just had my usual cc letter/report that she sends to my GP which says 'there is a 3cm hard left SCF node......and if she indeed progresses further, we will consider switching systemic treatment...". Bearing in mind in April the same node measured 0.6cm thats some progression.
Is it me, are my expectations too high? Why the do I have to get the information served up cold and second hand. Why the hell would she not discuss this with me at my appointment when she found it had progressed so much. Maybe she needed time to think and reflect but oh i dont know, it just seems wrong.
All i know is Im now sat on my own crying and scared cos if its grown 2.5cm since April and it's already pressing on my throat, well I dread to think about another few months.
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Well in my panic I hadnt thought of that but I know its gotten bigger quite quickly as its now visible and I can feel it more. Id asked the question shortly after starting treatment, whether Ibrance could cause it to swell because I didnt think the cancerous cells would grow so quickly - never was given a straight answer. X
It is utterly frustrating when you feel oncologist decides what you should or shouldn't be told... It could very well be that indeed she did not want to worry for something that might not be of importance but they should remember most of us get the letter they write ( well in my case they arrive 8 weeks later , when they arrive !)... Have you considered calling your consultant Secretariat and ask for follow up call ? (mind you this advice comes from the person who admitted on an earlier blog she could never get the right info for her appointment! 😂)...I am sorry you feel rotten right now, the not knowing, not understanding is the worse because we can't unleash our project management skills on it, we can't research, seek advice or cover options... The spectrum of possibilities is just too wide ( even for a detailed Google search!)... And that left us feel powerless , worried , frustrated and angry... You mentioned you see the same oncologist everytime you would expect she has by now worked out how much she can/should share with you by now? I hope you will get more info soon so you can stop worrying and start managing ... All the best.
Yeah always get the report weeks after. This ones re my visit on 18th July! Not 8 weeks but long enough. My next appointment is 22nd Aug so may as well wait now. I think my next scan will be some time early Sept so I guess that will shed further light. I am going to ask that she shres more fully with me next time. Getting the information like this isnt the most compassionate way is it. I know it doesnt change the outcome but at least I could ask some questions straight away and hopefully get some advice from her instead of just sitting here hanging. Ah well. X
Sorry for what you are having to go through ... if I were you I wouldn’t wait till 22nd of this month to shed further light ... Ring your breast care nurse on Monday and tell her the situation you find yourself in and how anxious it has made you and see if you can get to see your onc earlier ( or at least get some answers from them in the meantime ) . Hugs x
Hi Josie, so sorry for your news. I have never seen a cc of letter that oncologist sends to GP so am surprised this seems like common practise. When do you see your oncologist again? I had two liver lesions go from so tiny you could hardly see them to one of them being 2.6 cm within four months. I was taken off Ibrance immediately and put on Taxol (was already having deneusemab). I also have mets to spine and liver and had my original breast cancer was nine years ago. These things always seem to happen on a Friday. I would definitely ask for an appointment as soon as possible. Where do you live, is your hospital a good one. Surprised your treatment wasn't changed as soon as the oncologist saw such a big jump. sending you hugs. Ruth
Thanks Ruth. Im in Yorkshire under Weston Park Cancer specialist hospital. Supposed to be world class but thats not my experience. My next appointment is 22nd Aug so couple of weeks. Is taxol IV chemo? They dont seem to have any sense of urgency or understanding of the impact these things have. Thank god I get the cc letters otherwise Id not have a clue but I just wish she'd discuss it with me. Thanks x
Hi Josie, Two weeks seems so long to keep you worrying like this. Yes Taxol is IV chemo and apart from having to go every week , is not bad. However if I don’t get good news after my MRI and CT next week I will definitely be asking to try Xeloda. You are far too young for this to happen. You need to push the oncologist. Do you go alone or does someone go with you? My husband always comes and that is very comforting xx
I've been going on my own because my husband's had to work. Im ok with that , Im always vocal and have a list of questions ready. But you cant ask about something you dont know has happened - if that makes sense. Ill be asking on 22nd thats for sure. Xx
Ps I like the young reference. Thanks. When I was first diagnosed the chap I saw said I was young and fit and a good candidate for all treatments. I told him at 55 its a few years since I was called young 😆.
As long as you can keep your sense of humor (I try to also) that is good. When I got my first falsodex injections in my butt, and had just started treatment I was nervous and embarrassed that I had to pull down my pants to get these shots. When I pulled down my pants, the technician said "Finally, something I can work with." I had to laugh and I said is that a polite way of saying I have a big butt (I do). She said some of these women come in and are skin and bones and scream when I give them the needle. I barely feel it. Big butts rock LOL
Thanks Sandra. I definitely need a hug. My sons just come home but hes off away on holiday tomorrow so Im not burdening him with it. Hubby will be home soon though so he'll do 😁.
Its weird because some days the node feels bigger; it almost immediately seemed bigger when I started Ibrance and I asked the question then if that could cause it. Never got an answer to that but yes I guess if my throat was a bit sore that could contribute. Its all so scary but hopefully you're right. Thanks Sandra - our voice of reason 😚💕 x
Hi Josie,
I have just read this. I am so sorry to hear that you learned about the progression secondhand. Your oncologist should have told you in person first before passing on the information. You should not have had to read about it like that. Are you going to speak to her?
You said you were alone and crying when you read the letter. I hope there is someone with you now. I wish I could give you a hug. Do you know what to expect next? Please keep us informed.
Yeah Im seeing her on 22nd. Not good enough is it. This is the 2nd significant thing I havent been told. The last report said unchanged chest cavity infiltration....well thats all fine n dandy that it was unchanged but Id never been told it was in my chest cavity. A small detail they might want to have shared with me!!! I'll ask her what next but think my next scan is due early Sept so suspect that will be my answer and depending what that shows will likely determine it. Im meant to have LLETZ procedure next week - removal of abnormal cells from cervix. Had it last Niv and test of cure in June showed still there. Should have had it in July but neutrophils were too low. Have to see how they are next week but come what may Ill have to have it at some point or I"ll end up with cervical cancer to add to my ever growing list! God Im so fed up. Usually try to be positive but right now feel like whats the point. Sorry. My husbands with me now so at least I not on my own . Xx
No, it isn't good enough. I'm sure it must be hard to deliver bad news, but it's worse to deliberately conceal this kind of information. You have every right to be upset. I'm glad your husband is there with you.
My husband had surgery on Wednesday to remove a lump from the back of his neck. His GP and surgeon were both upbeat about it and mentioned all the things it could be (lipoma etc) but they never once said it could be cancer, which made me suspicious. I have been there, having been told it's nothing, or it's early stage to then have a bombshell dropped. So I understand what it's like when doctors minimise things or keep things from you. You have a lot coming up, so I would just focus on one appointment at a time. That's what I have been doing. If I looked at all the appointments coming up for me and my family it would be overwhelming.
Yeah you've had a lot on one way or another. Hope its nothing too serious for your husband. When will you know?
Ah well Amy's home tomorrow and it's her birthday so she'll cheer me up. Love that her birthday presents range from a Paw Patrol glass to Viktor & Rolf Flowerbomb perfume, Just about sums her up bless her - so grown up in some ways but forever a child in others. Is that what your brothers are like? I love that about her 💕. I can hardly believe she'll be 26.
Thanks for your prayers, Marianne. We are seeing the surgeon again next Friday, but may have the results before then. Incidentally, the surgeon is planning to become a breast cancer surgeon after she gets out of the military. I told Kim that this is one club he doesn't want to join. But if he does have cancer I am going to throw myself into getting him well again.
Well you've already got the diet,supplements and COC nailed, so Ive no doubt if anyone can, you can. Let's hope you dont need to. Keep us posted - also with your dad's stuff too 😚 x
Thanks, Josie. I am doing my best. I will post an update once I find out the results. My dad's blood test is on 27th August. I have to give him a steroid pill around 11:00pm or midnight the night before and then the blood test is scheduled for 8:30am the following day. I booked it online. We won't know the results from that until the end of October when I take him back to see the endocrinologist. When I told my GP that last Tuesday when I was there to get my zoladex injection she said it can take time for these test results. So we shall see. If my dad has cancer I am thinking of trying him on fenbendazole and Joe Tippens' protocol. I don't know how well he would tolerate chemotherapy, and as he is my brother's full-time carer. He would probably have to move in with us again if he had to start chemotherapy. But hopefully it won't come to that. I am just thinking ahead. x
Thanks! The results will definitely be in by next Friday when we meet the surgeon again to check the incision, but hopefully we will hear sooner. Then it's my dad's turn next. He's having a nodule on his adrenal gland investigated. I took him to see the endocrinologist last month and she ordered a special blood test that checks cortisol, renin and a few other things in his system.
I hope Amy cheers you up. My brothers are both older than me, but will always look up to me too, so in that sense they are the same. I used to sometimes resent how I could not look to them for support, but it was always coming from me. They are both foodies, so anything food related would make them happy!
I’m sorry this happened this way Josie. So not acceptable. I would not wait but that’s me. Is there anyone you can contact to speed it up? Sending you 🙏🏻🙏🏻♥️♥️♥️And hugs
That is so wrong in so many ways! I am so sorry they treated you this way; God bless you and Heavenly Father please heal Mindy, in Jesus name, amen! <3
I am so sorry that you have been treated so poorly by the very people who should comfort you. Sending lots of hugs and prayers your way. Blessings, Hannah
Sorry you are so upset. Maybe, just maybe, even though it got a bit bigger (I have lung mets) it is still not that much of an issue yet so they are going to hold back and wait and see what happens. If it stays the same, even though it got bigger, they may not have to do anything but continue you on the same treatment so they are waiting to see. Maybe the onco did not see the point in getting you so upset because at this point it is not a major issue and treatment does not have to be changed so they are going to watch it. Until they know for sure, the onco did not want to worry you unnecessarily. I had to go off my meds for four months (damn Ibrance) bc I had to get surgery and I was not healing (I was told it would be a month). My body was unable to heal properly and I had holes in my leg and was in pain. It took FOUR months. Before I went back on meds, they did the whole scan, ultrasound, etc. I was then told they found a SECOND cancer tumor in my breast (I still have my breast with one large original tumor). I was told the second one was far from my first one. So this one developed while I was off the meds. I then had to have biopsies done to see what kind of cancer it was. I had NO idea that you could have two different types of cancer in one breast. Well, it turned out to be the same type of hormonal cancer that I already had (could have been different type), so nothing has changed. I don't feel different and I am on the same treatment again. I asked her if my second cancer tumor in my breast would grow to be as large as my original tumor. She said we are watching it. So far, I am not feeling anything there. I was worried it would be a different type of cancer and then a whole new treatment plan would have to be done. But even though its a new cancer tumor, I just went back on same treatment. So, maybe like with me, they are just keeping an eye on it. I figured when I went for the testing after I healed from the surgery, that everything would be fine. But she wanted an ultrasound and the lady kept talking to the radiologist and coming back in and doing more ultrasound. Then they brought me to have a mammogram and I'm thinking okay this is not what I was supposed to have. Then they brought me back into ultrasound room again so I knew something was up but did not ask. Then the radiologist doctor came in to tell me they found another new cancer tumor far from the original one. But nothing has changed. It has been about four months and it has not grown. So maybe it is not an issue yet at all, so why tell you that it MAY be. They will be monitoring you to ensure that it stays the same and if not, change the treatment a bit. We can't change anything. It is what it is. I would not waste any time worrying until and if they tell you that you need to worry. Hugs.
Oo bet that was scary going off for 4 months. Im glad it turned out to be the same sort of cancer and you didnt need to change anything.
Thing is though, its significant enough for her to report it to my GP and start thinking about changing treatment. Also if she's going to cc me in to the report, at least talk to me about it first, especially when its me that reported my throat feeling strange and directly asked about it so it was already worrying me. To be honest Sandra pointed out that as my throat was a bit sore at the time, that could cause nodes to swell so actually might not be as bad as im thinking - although that said my throat still feels weird and i can still feel/see the node. Like you say, it is what it is but as its squashing my throat alreadu it does worry me with my airway. Thats already my main issue, ie breathlessness and I just wonder what my options will be. Query can I have it removed? Ill ask when I see her but my own personal view is if Im sat there in front of her and shes just made the finding, she should be discussing it with me. She was quick to discuss my lung tumour when it shrunk 2mm. Anyway, we'll see what happens next. Thanks for response and hugs x
Honestly no. I don't know but I never get nervous and upset. Even when told it was stage iv, my first reaction was Great, I will not have to have my breast removed. I had joined a forum board to get a better understanding and see what other women were going through but after a few weeks, I got off that board. All it was was women complaining that we were "terminal" and they argued about pink ribbons vs. specific ribbons for metastatic cancer. I seen how so many of the ladies had charts and files and worried about their tumor markers and seriously getting themselves to stressed out and other women suggesting supplements (dangerous for women to give other women medical advice without having their whole history.) Quite frankly, I was happy to be off the Ibrance. I felt horrible on it and on my week off I was in bed. I thought this is no quality of life. But a new cancer tumor developed in those short months so I was just relieved that it was the same cancer. I told my onco from the beginning. I do not heard to know my tumor markers, I do not want any copies of anything. All I need to know is that the medication is working or not working and what the next treatment plan is. I never email my onco after a scan. I wait until my last appt. to get the news. Worrying is not going to change anything. It is what it is. But then again, I have no children or family so maybe that is why I am less stressed. Nobody depends on me but myself. I can still walk, see, hear, comprehend things. With all the other horrible diseases out there, Parkinsons, ALS, MS, this seems not to have to many side effects plus on those boards I seen women with stage iv for over 8 years. I refuse to give cancer any more time than I have to. I am getting annoyed about going to the cancer center and that is only once a month. It's just my new norm. So I specifically told my onco that is all I want to know if its spreading or its not. Other than that, I could care less about the markers, etc.
Someone said terminal to me and I asked them not to use that word. Facts are facts though and the reality is that, more often than not, its a life limiting disease. I accept that but at the same time, it doesnt mean you have to give up. I'll never give up hoping and trying, its in my nature to find out anything n everything - not just with cancer though - its just how I am. People can and do live for years so you just have to think of that. Some probably like you just following what Onc says but theres a lot who do take matters into their own hands and have had amazing results. Personally Ill follow conventional for now - but I do have to understand it. If/when that no longer works for whatever reason, I will definitely look at what more I can do and I feel the more I understand the better my chances. May be deluded but it gives me the hope I need. We all get by in our own way dont we. Best wishes.
Ps my onc doesnt use tumor markers - says theyve not used them for 10 years at the hospital i go to. Ive heard people say theyre not a good guide anyway so not bothered about them. X
I also have issues with breathlessness. I have lungs mets but it is a side effect of Ibrance and some other medications. Sometimes if I am going for a walk, I have to sit down for a while to get my breath back and then continue. Not thrilled with that but this is my life now and I have to try and adapt. (Not that I was in great physical shape anyway before the diagnosis.) Tell her you want to be informed more. I tell my onco I do not need to hear the little things and I dont know files and charts and I told her I don't need to see my bloodwork papers. Just let me know when its spreading again and what the next step is. Keeps me sane. I never get nervous or anxious waiting for results. I just think it is out of my control and I trust my onco. But if you want more information, make it clear to her.
Actually, I have been through worse in my life besides being diagnosed with cancer so really being diagnosed with cancer was a little shocking but I never got upset. I was by myself (I have no family) when I was told, and then when told it was stage iv with more testing, I was relieved that I did not have to my breast removed. I am 59 and if I was going to get cancer, I am glad I got it now. I have traveled extensively in my 40s. I feel for the young children, teenage girls and young women who get it early in life and miss part of their childhood or cannot have children now. I think of it as a chronic illness.
I agree that your oncologist should have gone into more detail with you, at least telling you that putting you on antibiotics was the first step in deciding what was going on. I know that we are all more susceptible to infections because of our low white count so I’m sure that’s where her mind went first. She may have been intending to take you through the next steps with the next visit. I wonder if she even realizes that you get a copy of the letter. I would take it in with you and explain how that additional information made you feel. I’m sure she didn’t mean to cause you more stress! If the nodule hasn’t shrunk, I might press to get my scans sooner if at all possible.
Our imagination can make life so much harder for us. I can see you thinking about a tumor in your throat and thinking about all the horrible possibilities that could bring. That’s where I would be! I haven’t heard of anyone having MBC in their throat so maybe part of her thinking was that it’s just not a likely spot. But meanwhile, we are thinking the worst! Do what you can about it, take your antibiotics as directed, and then try to think about pleasant things like birthdays! Hugs, Elaine
Thanks Elaine. Yes thats my plan, to take a copy in and ask about it. Its the lymph node in my neck thats growing and pressing on other organs in and near my throat, not really another tumor but I know what youre saying. Our imagination is sometimes our worst enemy isnt it. X
I would be pissed off too. Do these people not understand what we are going through and how much anxiety waiting causes. I am so sorry you had to go through this. I think you have every right to confront her about it. My gosh, its not like we have a cold.
Thanks Kim. As Ive been thinking it through, it was the same week I had to come off Ibrance cos of low neutrophils and Im now wondering if she maybe thought a combination of the two bits of information might have been too much. I dont know but I still need all the information dont I - good or bad. Id even started to think i was imagining the node getting bigger - sounds daft now but as Id mentioned it a couple of times and it not seeming to be an issue thats just what I was thinking. Then there it was in black and white. Just crap! Xx
wow I'm off ibrance I was on it for 2 months in the same thing happened to me now they have said there's progression there and everywhere else in my body and my voice is gravely and lost and say I would need to have the nerve broke away from the vocal cord because it's paralysis in the vocal cord???? Soupset my numbers are from 200 all the way to 400 within a month's time so now I'm supposed to be getting on hickory the new medicine my body feels toxic and I'm supposed to trust that this medicine works. So I feel exactly where you're at I'm in the same boat. On top of that my liver labs are elevated. Before all this happened my right hip gave out there was a tumor in the hip that actually swole up my leg to the point I pulled my sciatica and was debilitated so now I've been stuck in a bed for 2 months. the one good thing is that I pranced reduced the swelling but still I have lesions all over the hips and I'm worried about fracturing the hip but also at the same time know that I need to wait bear to remineralize so I'm stuck in a rock and a hard spot prayers to you my friend and hope that they get your situation figured out I will update you on mine. I start pick Ray tomorrow they said to keep that to see if it let's go of the nerve that is messing up my vocal.
Im so sorry to hear of all your progression. It must be very scary for you. And how horrible to be stuck in bed. Cant you get some sort of physiothetapy to help with your problems so its getting the movement without jeopardizing anything?
I hope the piqray works for you and your vocal chord nerve does indeed get released.
Im on my 3rd round of ibrance - first month saw a shrinkage in my lung tumor and stability everywhere else - at least thats what they said. When ive looked back at a copy of the report, theres no mention in there of my lymph nodes and I know for certain they were bigger as thats the reason i had an early scan - i was struggling to breathe and felt the weirdness in my throat and could feel and see the lymph node. I was starting to think I was imagining it though when onc said stable.
I felt fine though otherwise on ibrance - no nausea, diarrihea and just a bit of tiredness. Now on 3rd cycle I feel terrible but theyve introduced Denosumab (Xgeva) so Im wondering if its that. Im suffering really bad with my stomach for last 2 weeks - very bad diarrhoea and nausea/indigestion. I cant eat anything and Im exhausted. Might tell ic i dont want the Denosumab or at least defer it as Im not in so much pain with bone mets just yet.
Do let me know how you get on with piqray. I hope we all get some peace. Very best wishes. Josie x
Yes the denosumab did that to me ughh had to quit horrible flu like symptoms! Yes I see Ibrance works for most that's wonderful. Stunned to read same thing in neck happened to you? I do have Ortho with surgery lined up if needed they are trying to stop progression first. Caught between the rock and a hard spot for now. Much Love ❤️
See you state you feel fine on Ibrance. Not everyone does. The first two weeks were fine and I thought this is easy. Then came the third week (it was my first time after being diagnosed and being on these types of drugs). I woke up and felt like someone hit me with a bat and could barely get out of bed. My week off I never felt so sick in my life. It was last August and it was hot as hell in NY and I had to turn off my central air and I could feel how stuffy my apt. was and yet I had on pjs, a robe and was in bed with three blankets and was shivering. I hated it and started getting depressed when my week off was coming up. After the long break off it and I told my onco I feel normal again and am loving it, I am now on Verzenio. Could not handle the 150 mgs., the 100 mgs. so now on 50 mgs. You take it twice a day with no break. Being on the 50 mgs., I feel normal again. I don't feel tired, I don't get sick, I dont have to take naps every day like with the Ibrance. I feel great on this new drug. Unfortunately, Verzenio has on average 16 months before progression so I will wait and see but am happy now that I can do things and make plans and not worry what kind of day I will have when I wake up. Wishing you the best.
Yeah I was fine for first two months. More or less carrying on as normal. But this 3rd cycle is different. Unless it is the Xgeva but Im feeling so bad. Had a good day yestetday but up all last night running to loo and felt really ill today again. Thats what ive been like for almost 3 weeks now. I want to keep on both but cant carry on like this, no quality of life. Youve got to be able to move off the bed or settee havent you. Sounds like youre doing ok now. Hopefully your verzenio will last as long as possible before having to move on. X
Its not at that point yet Sandra but if it was Id be straight there. Its the same as it was a while back - you advised me about the possibility of superior vena cava syndrome and thats why I had an early ct scan. Came back saying no SVC problem but never actually mentioned the progression of lymph nodes. I only know this with hindsight as I took Sophies advice and roped in my GP to get copy reports. Its like piecing together a jigsaw. I was starting to wonder if I was imagining it then bam! I get the cc'd report from the Onc . Just wonder why she didnt have a normal conversation with me to say yes youre right I can feel its got bigger...or just something .
We're always rushed in and out in NHS appointments but Im going nowhere next time til I know whats going on.
Feel horrid today. Up all night with bad tummy. Been like it for whole 3rd cycle of ibrance but now theyve also introduced Denosumab (Xgeva) so maybe its that. Im totally exhaused n not seen a green leafy veg for days. Just cant eat anything. Oh dear, Im sounding like Im having a pity party . Sorry. Ill brighten up soon Im sure, there's people loads worse off. Thanks Sandra.
I want to admit up front that I have not read all the replies to you! So maybe others have said the things I am going to write...... I'm a long timer at this, and was diagnosed with denovo bone mets the month of my 58th birthday, and am now 73! I had the same onc all those years until she retired at the end of last year. She was wonderful at communicating and we were definitely on the "same wavelength." (an idiom here in the US that means we both use the same basic language and thought patterns and share a view of, in this case, cancer.) I told her early on that my appts with her would be most productive if I had the results of blood work and scans at least a couple of days ahead of time so I could get any emotional reaction out of the way and think more clearly. I've done extremely well and I did not have lymph node progression until I'd been in treatment quite a few years and was in a fairly peaceful place about all this cancer stuff. I just told myself that the lymph system was doing its job of grabbing onto cancer cells and keeping them from traveling places they could cause real trouble. With a node pressing against your throat, I think it would be reasonable to ask that it be removed--the node, not your throat, lol! I've had one node removed and the procedure was so minor I don't remember it but it gave the pathologists a good chance to examine the cancer cells again and they were still E+ her2neu -. Another thing--most of the radiology scans we have take images as "slices" and since each scan is going to slice at slightly different places, cancer growth can be difficult to determine in a precise way. Think about slicing an egg! The slices at each end will appear smaller than those in the middle. Unless you have a rip roaring aggressive cancer, there is generally time to repeat scans, sometimes several times. Something to ask your onc about. I do have a bias, as a long termer, but my thought is that I would rather stay on a treatment a bit too long than give it up too soon. Most of us are in this for the long haul. I don't know what kind of access you have to bc specialist oncs there where you live, but asking to see one for a second opinion before a treatment change can be helpful. Obviously not really doable when the cancer is progressing in an organ like the liver, lungs or brain, at a fast rate.
When I was first diagnosed, the two chemo treatments used first most often were Xeloda and one of the taxanes (taxol, taxotere, abraxane). I am highly allergic to trees and don't know if I could ever use a taxane. I am allergic to Zometa but was able to tolerate it with a half dose, IV premeds (benedryl and hydrocortisone), long infusion time and extra fluids. When Xgeva became available, I was switched to it.
I hope you will be able to find some peace in the midst of all this! Living with MBC is certainly a challenge!
Thanks for all the onfo. Good idea getting copies prior to your appointment. I can ask but its NHS so I doubt they'll do it. Ive all on to get a copy of bloods. Its always a different nurse and they look at me as if Ive asked for the earth. I want to stay on ibrance but since they introduced Deno/Xgeva I feel shocking. Ill talk to her when I go and see what she says.
Always good to hear from a 'long timer' - gives us all the hope that we need. Thanks and best wishes 😚 x
You shouldn't be made to feel that you are asking for the earth when you want test results prior to appointments. I am able to get my pathology and radiology results printed by my GP, but she won't let me have my radiology results until after I have seen my oncologist. I may contact the CT screening department and see if they would be willing to release my results right before I see my oncologist, but I have a feeling they will say no. I think that with pathology results they do not mind so much, but with the radiology report they prefer to have our oncologist go over it with us. That has been my experience, but I am going to try!
Sophie x
Hi Josie. For some reason your post didn’t get to my emails, so I missed it.
I’m so sorry you have been going through such a terrible time. Your head must be all over the place. I don’t think people realise the spiral of thoughts we go through when we are told things, or in your case, find things out second hand.
I’m glad you have your next appointment soon. Perhaps the oncologist is coming up with another treatment plan depending on how you present, or your next scan results. Although that is another wait!!
From reading lots of posts on here, many of the ladies have had treatment changes, and have seen improvements. Go with your gut and tell the Onc that you felt changes as soon as you went on the Ibrance. Maybe you and Ibrance aren’t meant to be. And if that is the case, there will be something else for you. X
I think I'll end up on a lower dose but I dont mind that cos like you say, lots of people reduce. Only a few days til my appointment so will talk it over with Onc. Xx
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I was diagnosed with Metastatic Breast Cancer also in the lymph nodes and bones. 
Kadcyla - should I really be travelling? New lump on lymph node.
Progression.
Progression in liver 
progression whilst on fulvestant and palbocilib
