After changes to my breast (no mx as diagnosed with secondaries same time as primary) my onc advised that tumour markers were slightly raisef and she thought Letrozole had peaked for me and I should change to Capecitabine. The right breast where the tumour is has now gone really hard with more changes to the nipple. She ordered a CT scan andvmeanwhile ordered my prescription for Cap. When I went to th chemo unit to have Zoledtonic Acid infusion a nurse told me that as my scan results looked good a different onc had cancelled my prescription. She gave me a copy of my scan and the tumoir is described as 26mm but I can feel a mass four or five times that size. My breast feels as if it has no breast tissue left just a hard lump. My Macmillan nurse had told me a couple of days before this that the new onc had seen my scan results and given they looked slightly improved but the breast and tumour markers contraficted this he wanted to see me. Next thing I knew I was told he didn’t want to see me. After much confusion I went to see him yesterday (five hours round trip). Only he fidn’t see me I saw another onc. She at first refused to look at my breast and said she could only go on scan results. I asked what could be causing these changes and she never answered me just kept repeating the scan showed an improvement. I told her as mammogram results last April came back clear even though I presented with a lump and I was diagnsed with seconday cancer in September I did not have much faith in scans. After me begging her to check the lump she said I should go for an ultrasound. I explained that my lump does no show up well on an ultrasound either. She insisted I had to have one and after some persuatio, mainly by the nurse sitting in on the appointment, I was sent to the breast clinic. The onc said they would see me in half an hoir and tjen I had to go back to oncology. I proceded to see a BCN who said I wouldn’t be seen that day. She had a look at my notes and spoke to the breast surgeon who has examined me before. He agreed to see me and he said no point in doing ultrasound as my lump foesn’t show up. He examined breast and said there is definitely something going on. He didn’t have access to all my notes at that stage. He said he will discuss my case at MDT meeting on Wednesday and they will phone me. He thinks now might be the time to consider mx as he thinks I will need it at some stage and if I leave it too long it will no longer be an option.
I have lost all faith in the oncology team and not sure where to go from here. I have taken everything up until now in my stride. I know it’s too late now but I am so angry I was never told when I first started being diagnesed with cysts (about five years ago) that some cancers don’t show up on mammograms. When I presented with a lump last April and scan came back clear why was the only advice (in letter) ‘if you are worried speak to your gp’. Of course I wasn’t worried they told me scan was satisfactory.
If any of you have fallen asleep at this essay can you please tell me if I am being silly. I thought putting this down would help me but I am now in tears of frustration once more. I never cried from diagnosis last year (even when each appointment gave me more bad news). I have spread to ovary, womb and multi bone mets no major organs as yet. Another thing thst happened with onc I asked her about painfull arm I have. It has limited movement to the side and will not go all the way up over my head. She never checked it or range of movements just told me to take painkillers.
I am now going to stop rabbiting on - maybe I am just feeling sorry for myself.
Sorry that should be not fallen asleep. If you have fallen asleep I don’t suppose you will be able to answer me!
June
Hi doodlecat,
Sorry to hear what you’ve been through. If you need a good listening ear then the helpline are just a free phone call away, they’re here to support you through this - give them a call. 0808 800 6000 lines open at 9am today until 5pm.
Take care,
Jo, Facilitator
Doodlecat, I did not fall asleep, rather I wept with you. I think you have done so well in bearing up with all you have been through. You my dear are not feeling sorry for yourself, I read you as a vulnerable, scared woman trying to make sense of vague answers given to direct and clear questions - the actions to take that would prolong your life. I hope you have someone in your life who is helping you through this very difficult life passage, because you most certainly deserve it. In all that you have told us, timming seems the most crucial, mainly in regards to the mx. I don’t know where you are located yet you can get a second opinion and in doing so, you might have your faith and trust restored in ocology because you will need to have that to continue with all that you are facing. Again, according to your location, calling a Maggie Center near you can be helpful for you - to help with movement in the way forward. You may have frozen shoulder, I had that and many of us have had them too. A orthopaedic referral can help sort that out.
I’m here, I care and there is hope. Love to you Doodlecat, LB, x
Hi doodlecat
I just wanted you t o know you have not sent anyone to sleep. I have only just read the thread. It is o said that our treatments are such a lottery. The individual personalities of onc nd doctors play such a large part in our health.
Has lilac says I hope you have one one strong to help you maybe they can take on these people because when we are vulnerable we are sometimes weak and do not ask the righg questions.
I was getting frustrated yesterday because bcc nurse yet again had not returned my call. So I can only imagine how difficult all this iplease has suggested try and get a second opinion there are lots of good onc’s and doc’s out there.
take care
Mara xx
Thank goodness the surgeon has got involved, as it sounds as if he’ll fight your corner for you and explain to the onc exactly what needs to happen, i.e. that you need to have that mx a.s.a.p.
I think that this is one of the many problems with cancer care; the fact that it isn’t holistic and each specialist only really understands his own area, not the whole picture…
Hopefully, the outcome of the MDT will get things moving quickly for you and help restore your confidence. If not, I agree that you should get a second opinion. It’s so important to feel confident about your onc’s decisions for the treatments you’re being offered - we face enough uncertainty as it is!
Good luck, June, and let us know how that meeting goes.
Thank you so much everyone. This means so much to me especialy when you all have more than enough to get through yourselves.
I was thinking of asking for a second opinion. I will wait to see how the meeting goes tomorrow but will probably still ask for second opinion. I would also probably rather travel to another hospital than go back to that oncology department. Breast surgeon is a breath of fresh air though. Tells it like it is but is very suppportive.
I will keep you posted.
June
Doodlecat - what I’d do. When your team contact you tomorrow with their recommendation, note it down and then book an appointment with your oncologist ASAP. You can reflect on it and consider what they recommend and then write down ALL your questions to ask at meeting with onc. A few Q’s you may ask are: if m/x is the way to go, why? What are the alternative treatments -for example radiotherapy, change of AI, chemotherapy? Would m/x be way forward as well as other treatment?
TELL them how distressing it’s all been for you and you need thorough answers to your questions. It may be that m/x will help you feel better emotionally/psychologically so discuss everything with them. I think you need to take someone to a discussion with onc/surgeon who can back you up and ask for any point to be explained further if you get flustered or don’t understand something.
Also, it’s worth getting a copy of your medical notes, which you are entitled to do, to enable you to make more sense of your diagnosis and treatment. Hope this helps.
Jen.
Thanks Jen. I think it was the fact that I had access to my notes already and knew more about my cancer than the new onc did that was so frustrating. There are a couple of letters I don’t have so thanks for the reminder I will organise that tomorrow. I will take notes tomorrow when I get the call. I did ask for clear answers yesterday but just didn’t get them. Just kept getting told the size and shape of my breast didn’t matter it was the scans that counted. Thanks again.
Hi, I was diagnosed with bone mets and bc together. This was ten years ago and I haven’t had surgery so have been living with my primary for ten years…I will send you a private message.
Hi again all. Just thought I would update you on phone call. They want me to stay on Letrozole for another month and then review it. The breast surgeon is now the one I will see (not sure how that works but as I trust him I can go along with that). I found out today from my Macmillan nurse that tumour markers had went from 70 back up to 170 and I know not every onc puts a lot of faith in them but they have been a good indicator for me. Went down then levelled off before climbing again. My GP and macmillan nurse also believe that Letrozole has stopped working. Feeling so frustrated but I will start to organise a second opinion tomorrow. GP phoned me this afternoon and ended up coming round to see me. She is going to talk with the breast surgeon tomorrow and get more info on today’s meeting and then phone me. When she phones I will speak to her about second opinion. Even if it is me who is in the wrong thinking Letrozole not working I have lost all faith and can’t see a way of it being restored. Love to all and sorry not to mention you all by name but your support and advice is much appreciated.
June
I’m glad your GP will be talking to the surgeon tomorrow - hope you get definite info and a clear treatment plan very soon.
Jen
Thanks Jen. I appreciate you have more than enough to deal with yourself and have taken the time to support and advise me. Take care.
June
Your GP sounds fantastic, June! I really hope things’ll get sorted and moving for you soon.
Angelfalls. She is fantastic. I not sure if she was alerted by the hospital that I was having a bit of a meltdown but she arrived at my door five minutes after phoning me. One good thing that I think will come out of this is that she will be more involved with my treatment again. When I was first diagnosed she coordinated with the hospital. She then had some time off work and I was allocated to another GP who promptly went on maternity leave. I live in a village and the medical centre has many excellent, caring GPs. Thaks for your thoughts. Hope you have a good day.
June
Hi all, thought I would give you a quick update. Macmillan nurse came to see me today after her meeting with my GP this morning. The GP has spoken to the breast surgeon and it seems they all agree that the letrozole has more than likely started to fail. I have agreed to wait and see him in three weeks just to see if there are any improvements. I can phone and request an earlier appointment if anything changes before then. I have taken a couple of days off work and now feel much mote relaxed. I am going to stay off work next week and then decide from there if it is worthwhile continuing work. I work via an agency and don’t get paid if not at work so no guilt there. Only got seven months out of the letrozole so that’s not too good hopefully do better on the chemo. Over the last few weeks three different health professionals have advised me to stop work and spend the time with my family. So that’s probably going to be my plan.
I feel much better today. Probably the result of the chat and knowing I am being listened to allied to the hanging around the house not doing too much.
Thanks again for all your support.