Constantly feel in the dark

Reading other people’s stories, I feel like you all know what’s going on. Some of things people talk about, I don’t even understand. I had surgery back in March but am still having new treatments thrown at me. I’ve never really been given a plan. Back in September last year when it was confirmed I had breast cancer, I was told it was unlikely I would need chemo but I would probably have radiotherapy and then hormone therapy - a pill for 10 years. We already knew it was in my lymph nodes before surgery. Come my follow-up appointment after surgery, there was no sit down and talk about what my treatment plan would be. The doctor I saw just started talking about chemo as if it was already a given. Later when talking to the oncologist she said as it was in the lymph nodes, chemo was always going to be part of my treatment. Fast forward to after my chemo, I’m having a phone appointment with a radiologist because I was questioning having the radiotherapy and she said it was advisable with my “particular nasty” cancer. Now after all that, I had an appointment with yet another consultant. This one says hormone therapy is an injection every month and the tamoxifen. Also tells me about abemaciclib, I had been sent the side effects of this drug previously but this was the first time I had been able to discuss them. I certainly wasn’t ready to agree to it. Then at a later appointment, when I agreed to this drug, zometa was mentioned- a bone infusion. Why am I not being told everything at the start? Anyone else have this? I understand everything being delt with in stages, it would be a lot to take in at once but I feel like they are not telling me everything. This latest consultant assures me my cancer was not particularly nasty or aggressive (was diagnosed as grade 2, no idea what stage) but I am just being offered these treatments to give me the best chance of it not coming back. I just think some sort of clarity at the beginning, a clear plan and ALL of the things to expect. If not at pre surgery but at least in that initial follow up after surgery. I went back to work after surgery cos I wasn’t expecting chemo and I didn’t know radiotherapy was everyday. Now I’ve gone back to work again and I’m like oh hang on a minute, I might have some side effects that could affect my work. How is anyone supposed to get on with their life if they’re not given a clear plan? Sorry for the long post, just feeling fed up with the whole thing.
Also forgot to add that when I went to pick up the abemaciclib there was also some other tablets in with the prescription. The pharmacist tells me they are incase of diarrhea. That’s good, I would be grateful but they contain opioid in them - last time I had a pill with opioid in, I nearly passed out. Had the consultant discussed this other tablet with me I could have asked for an alternative. As it is, it was late on Friday afternoon and I’ve been unable to get hold of anyone to discuss the affect of opioid. So what am I supposed to do? It’s Saturday evening and not wanting to put off the abemaciclib, I’ve taken my first one. I just hope I don’t need the anti diarrhea tablets before I can speak to anyone.

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Hello sprout 78
I agree the organization of the medical teams can be lacking. I wonder if there are so many cases, so many options for treatment, and a desire to offer the patient as many choices as possible rather than say ‘this is what you are going to do’; that it just becomes confusing for us. I’ve noticed too that this site posters use medical terms and pharmaceutical terms rather than Brand names. For example, I’m on Verzenio. But it’s referred to here only as abemaciclib. Speaking of the side effects, I take an over the counter anti diarrhea pill which works fine. One with my morning Verzenio pill curbs diarrhea well. I’ve experienced other unpleasant side effects: lethargy, fatigue, infections, elevated liver enzymes. It’s a powerful drug. I had an initial diagnoses of breast cancer several years ago then recently it metastasized to my spine. I’ve felt like quitting it all but I’ll hang in there. Hope you will too.

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Hi @sprout78

So sorry that you are experiencing these problems . I hope that you’re ok following your first dose of Abemaciclib . If your anti - diarrhoea pill is Loperamide then it works differently to most other opioids it has less of the side effects that caused you to pass out last time.

Much as I thought I knew everything that was important I later realised that wasn’t true and despite being proactive as to my own care / treatment plan I made some decisions for the wrong reasons which I now regret . I think some of it was down to me latching onto certain things and not paying enough attention to others I was told or not asking the right questions which may have led my team to think I didn’t want to know the answers at that time or that I already knew them . There were gaps in my knowledge and understanding that I wasn’t aware of - if I’d joined this forum at the outset I would have known more. Despite everyone sounding like they know everything I’m not actually sure that that’s true.

This telling you things in stages is something I experienced with a sight loss condition - it took me months to get the truth that time and I felt quite distrustful for a while. I prefer to know as much as possible up front and it sounds like you do too - if chemo was always going to be part of the plan from the outset I don’t understand how or why they withheld that . I feel quite angry on your behalf that the communication has been so bad and that you haven’t been able to make informed choices or plan your life . Do you have copies of the letters your team sent to your GP - I believe your surgery is supposed to send them out to you it might be interesting to read through them and see what they say . I have received a letter after every appointment.

I don’t know if you have a good relationship with your BCN but maybe you could reach out to them initially about this - it sounds as though someone needs to go through it all with you to explain , make sure there aren’t anymore surprises and give you all the information you need so that you don’t feel as though you’re being railroaded . Also perhaps the helpline might be able to give you advice and support with this on Monday.

With love
Joanne. X

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This is not your lack of knowledge it’s lack of communication from youe team.
I’m similar to you as i had positive nodes. I had chemo then surgery. My surgeon was absolutely amazing. She kept me up to date, answered all my questions and copied me into her letters to the GP so i had all information.
It was however a very different story with the oncologist. I asked numerous times to be copied into letters which has never happened (now been in treatment for a year). I made it very clear that i wanted the full picture as i needed it to prepare myself. Information was not forthcoming & i had quite a few heated discussions with my BCN until she told me id be having chemo after surgery. After surgery the oncologist then springs on me that i need 3 weeks of radiotherapy, i told her she had made a mistake and must have the wrong patient (i honestly thought this as despite my plea for information nothing was said about radiotherapy). I wrote a strongly worded email to the oncologist reiterating that i have asked many times for the full story but it has fallen on deaf ears.
I plan to ask for all of my records via freedom of information when treatment ends next year.
The only reason others on here seem so knowledgeable is because they learn from others via forums or from people who have already been through it. Dont beat yourself up about it.
Use the forum to ask as many questions as you need to.
You could also write to your oncologist/BCN explaining how you feel & that you need more info.
Good luck on your journey back to health

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One of the biggest differences between the NHS and the US healthcare system is that you all aren’t automatically given your testing results. You have a doctor go over them but here in the US we have what is called a My Chart and our tests are automatically dropped in there and we can see everything. That has both good and bad sides. At any rate, those of us who seem to know a lot have probably read our test results. You can always ask to see your’s if you’d like. But once seen they can’t be unseen. However, once seen you can also do research if that’s something you’re interested in. Up to you and your comfort level.

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Thankyou for your response, yes I think the system needs a big overhaul. Sorry that you have to deal with everything again. Can I ask what anti diarrhea pill you take, I could ask the doctor about it when she gets back to me. I’ve literally had only 2 pills and no side effects yet! I do stress about the side effects though, and never know if an ache or pain is a side effect or just one of those things lol.

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Thanks for your reply. Yes the anti diarrhea pill is lopermide - thanks for the info, still nervous to take it, especially as may need it when at work and I drive in my job and are out and about on foot too. Only had 2 pills so far and no side effects yet, but early days.
Yes it quite upsets me not knowing all the facts and not being told about chemo earlier. Unfortunately that is not the worst thing that happened. After the initial diagnosis and follow up scans I was told at an appointment that it hadn’t spread- I then received an appointment in the post for an mri to check for metastatic cancer in the liver and kidneys! I was in pieces. The surgeon phoned me up to apologise, apparently they all have a meeting once a week where they all look at each others cases. In this meeting one doctor thought he could see something on my ct scan. It turned out to be a cyst and have been told it’s nothing to worry about. I can not get my head round why you would tell someone, they are clear elsewhere before everyone has had the chance to look at the scans. I was very upset.
As for reading thw doctors letters, I don’t always read them because at the start I found them upsetting. I will now have a look through them and see if there’s anything I haven’t been told. Whenever I’m questioning the treatments, I do say I don’t want to make the wrong choice. The chances are,I’ll go along with all the treatments in the end but I just want to know all the facts first. I do feel if I had more information on my cancer, then I probably wouldn’t be questioning everything all the way along. As far as I was concerned, they got it all out, they cleared the lymph nodes and there were no signs in the parameters. The only alarming thing was, it was in 4 out of 9 lymph nodes but other than telling me that, they didn’t seem to be alarmed. So all of this treatment does seem to be excessive to me. I only agreed to chemo because of the involvement of the lymph nodes.
As for BCN, that’s one of those terms that I really don’t know about. I’m guessing it stands for Breast Care Nurse? As far as I’m concerned, I don’t have one person to contact.

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Thanks for your reply, I think its appalling they way they handle some things. I’m sorry you’ve had to deal with similar. I do get all the doctors letters, so am going to go back through them to see if there’s anything I missed. I would rather find out about the stuff at the appointments though, that is what they are for and better than a letter as a 2 way discussion. I’m not really sure who is my oncologist! I was seeing one person pre chemo and now there’s this other doctor that I’ve been seeing and I feel like they’re not on the same page. I completely understand why you thought they’d made a mistake about the radiotherapy- I felt the same about the chemo. As in my previous reply to Joanne, I don’t think I have a BCN. There is the breast care nurses answerphone that I can leave messages on. I have also been given another number that came with my first follow-up appointment since chemo and radiotherapy and starting these meds. I rang it the other day, again an answerphone stating if I want to leave a message for … then lists 3 or 4 names. I hung up because I have no idea who these people are. It’s all very upsetting really. Good luck, in getting all your info and I hope there’s no surprises in there for you too. X

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Thanks for your reply, yes I can see how that can be upsetting too! We do get a copy of the letter that is sent to the gp but I admit I haven’t always read them as they can be upsetting too. I am going to go back through them now though to see if there’s anything I’ve missed. I do feel they should be telling me more though and I should have been told more sooner. They could always ask, if I’m ready to hear the results. I feel like I’ve gone past the point of asking about the staging but if it’s not in any of the doctor letters, I may ask.
It had been good to discuss this issue here. I don’t feel so alone now. Thankyou. X

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Yes sorry I meant Breast Care Nurses they should be available for you to contact . Communication doesn’t seem to have been the best in your case to say the least but I hope that the letters may help you now - they may be upsetting but being in the dark and then getting nasty surprises is also upsetting . Yes I agree that these things are better done face to face than having to catch up via letters that may or may not arrive .
Maybe you could use them to fill in the gaps though - compare them with your appointments and make notes and if you’re still unsure ring the helpline .They may also be able to answer questions about the medications as well .

Joanne. X

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Thankyou, yes I will do that. I do have a number for the breast care nurses, where I can leave a message and they get back to me. I did leave a message on Friday, so maybe someone will call me on Monday. Thanks for all your help and understanding. X

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Hi Sprout78.
I too can relate being left in the dark and particularly, not having a plan in place going forward.
I was told one thing by my surgeon, then something completely different from Oncology.
The frustration, is not being enough consise information to prepare yourself, if you need time off work, having to buy various things if you have PICC lines or hairloss etc…
I personally didn’t find the BCN nurses very helpful 2 years ago, when all this started, even to present day.
I don’t just have breast cancer, but SLE and a recent retina detachment, so one source of treatment from one health professional, wouldn’t work for me with safety.
I was fortunate to see an advert from Holland and Barrett about booking a free chat to a nurse. This was regarding the menopause, but the advice i think is relevant to you and that is via your GP, there is a medical meeting, apologies i can’t remember the correct name, but basically, it is set up by your GP, to connect your other health professionals together and between them, they must come up with a medical plan for you, taking into consideration any other health conditions or concerns you have.
It’s worth a try, if you have a reasonable relationship with your GP and then at least, you can get some “layman’s terms” of your treatment relayed back through your GP.
Hope this makes sense and you can get some help with all these conflicting processes.

Take care. X

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Thankyou for your response. Im sorry you’ve had other things to deal with. I can’t believe that they don’t have all the details to hand themselves and that you had to organise it, albeit through your gp. My gp surgery is not easy to contact either, I tried complaining to them early on as they actually gave me a courtesy call. This was actually before I realised how much I wasn’t being told. I was told by the gp that there wasn’t much they could do. I am lucky enough not to have other health issues so there shouldn’t be an issue between the different health professionals.
I hope you have managed to sort things out now and have suitable plan for yourself. X

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I feel exactly the same they throw all these things at you chemo radiotherapy and you think they know best since ive finished radiotherapy ive beengetting bad side effects in my head ive explained my symptoms on numerous occasions just got fobbed off last phone call they told me to go to my gp which ive now found out ive got high blood pressure which you can get from chemo and radiotherapy no has told me that or tried to help me its like you have to push all the time to find things out !!

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I didn’t know about the high blood pressure. My blood pressure was up last time I had it taken but I was under a lot of stress, so put it down to that. It’s strange that they’ve caused the high blood pressure but aren’t there to help you when it occurs. On my first phone call after the first dose of chemo and before the second, I was asked to report any side effects. When I basically said, I’d had nearly all the side effects but at a low rate - the nurse simply said that’s unusual after just one dose. Not don’t worry or if they get worse to call the helpline. Anyway, I was ok and didn’t get them all again so decided it was all more down to stress and anxiety of my first dose, rather than the actual chemo itself. Hope you get the blood pressure sorted. X

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I understand your frustration. It feels as if every time I see my oncologist she has thought up a new torture for me. I was totally blindsided by having to take 6 months of Cape when I thought I had finished treatment.

One point is that the oncologist doesn’t usually write to your GP and the GP isn’t involved at all in chemotherapy. That’s why they don’t have a clue what is going on and why you don’t get a copy of the letter because there isn’t one. The best thing they can do is to tell you to call the chemo helpline.

You should have a named BCN so maybe you could ask for one.Mine is wonderful and speeds up appointments, gets results for me and lets me know what is happening. In return I take them cake fruit and drinks.

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A couple of times a nurses name has been mentioned, the first time I was told you’ve met (said name) I let it slide. The second time, I said I’m sorry, I have no idea who you are talking about. A couple of days later, I was called by this nurse- I can’t remember now why. Then recently this nurse gave me a call back to a query I had - she started off by saying “it’s been a while since we last spoke” she was overly familiar on the phone, like I knew who she was and as if we had a rapore. We don’t, because I don’t know who she is. We have never to my knowledge been introduced either in person or over the phone. I almost don’t like this person now because it’s assumed I know who she is, even by her. My guess is she is supposed to be my named nurse but now I don’t want her to be because well we’ve not had a good start. X

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In my experience there is a moment at the first mammogram or ultrasound when the radiologists either let you go without a comment ( all normal) or they take you through to the Room of Doom where several very kind nurses are waiting with a box of tissues to debrief you and prepare you for the diagnosis. They allocate your nurse at this point and mine comes to my appointments with the surgeon (or does them herself as they do all the post op care) I’ve become far too friendly with them thanks to my prolonged experience of two different cancer in two years. Maybe you could ask for a new one and start again? They are very useful if you have a good relationship

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Hi @Concerned75

From reading this thread apart from a couple of blips I think I’ve been lucky with my BCN service .

It never ceases to surprise me what information can be picked up when participating on this forum . I wish I had known about the meeting you mentioned when my Mum was alive - she had a lot of different medical conditions and we were often given conflicting instructions . In particular she had severe autonomic neuropathy ( cause unknown) and every time she went into Hospital the Doctors did not have a clue . This business of treating only one thing / one part of a person only works if there’s only one thing wrong and sometimes not even then.

I hope that you have a coherent plan now and that you are recovering well . I hope that your eyesight is ok following your retinal detachment - I had a central retinal vein occlusion a few years ago now which wasn’t a nice thing to go through and my eyesight was permanently damaged. I was pretty concerned when I was initially prescribed Tamoxifen which carries a significant risk of causing eye problems .

With love to everyone on this thread and hope that you all get the proper consideration and information that you need and deserve .

Joanne. X

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Thanks very much Joanne. I think health professionals tend to forget that everything has to go into the same body. You can’t divide yourself up to take a particular treatment in different parts or switch bits of yourself off.
It’s a frustrating road, but luckily nowadays, i will speak up for myself and question said health professional on things im not happy with or don’t understand. Afterall, only you really knows you. X

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