Bad news today

[badnews943]

Had a nightmare today. Received news that I have type 3 breast cancer which may be in my lungs. I'm having a lung biopsy next week but the Dr seemed pretty certain.

I'm not sure what to think. Any advice or support?

That's very good news. Well done getting yourself a new GP you're happier with. Having a GP you like and trust is really important.

If l remember rightly you were having problems getting a needs assessment from social services, so it’s good that you’re speaking to your GP - they can help with that.

I think wanting a second opinion is understandable - l certainly thought about it. But l think you need to wait until all your results are in and you have the whole picture from your consultant regarding the type of cancer, the stage and the treatment options. Sometimes the need for a second opinion stems from reluctance to accept the diagnosis, and once you have all the information you need to make informed decisions you’ll likely feel differently - and as you say it will delay treatment, and probably won’t change anything.

Regarding talking to the cancer charities. You need to remember that they don’t know anything specific about your case, so will be very guarded in what they say. That doesn’t mean anything other than they have no information. You’re very vulnerable at the moment and looking for reassurance, so gently, you need to stop scaring yourself needlessly by asking questions they can’t answer, because you’ll misinterpret and that that will add to your anxiety.

Your consultant is the one to speak to, as they will have all the information you need when your results are back and will have a treatment plan for you. I do understand the anxiety of waiting for results - it’s definitely one of the hardest aspects of all of this - but it won’t be long and then you’ll have a clearer picture.

@Rosscameasdoody

Thanks. Yes the Dr has made a referral to SS, so that's helpful.

I meant a second opinion on treatment options once I have the plan because different Drs handle things differently.

No, the charities don't have the details but I suppose I'm looking for reassurance and I'm not getting any.

@badnews943

If your hospital does it like mine did, the treatment plan will be based on standard plans for your type and subtype of cancer, the grade of cancer, the stage of cancer and any other factors that influence it.

It will have been discussed at the MDT team meeting, so oncologists, surgeons, radiologists etc will have discussed it.

However, the main person will definitely be your oncologist.

Any reassurance the charities give now can't be based on solid information or facts because the necessary details are not yet known. It's better they remain cautious and wait till you can tell them your biopsy and scan results. Then they can go through them with you if you'd like them to etc. On 30 July I imagine you will know much, much more.

Thanks. I phoned the nurse yesterday and she said my liver/bone results won't be available for a couple of weeks. I'm thinking of postponing the lung biopsy results till then as I just don't want to know.

I spoke to Maggies regarding benefits and they said the same thing. To wait for all the results to be back re PIP.

I don't know what to do about my sofa. I bought a new sofa and have 2 weeks to return. Im thinking of getting a sofa bed but it will take a few months.

Do you like your new sofa? Are you thinking that you'll need to sleep downstairs, is that maybe why you are now considering a sofa bed instead? You are certainly planning ahead a great deal. Are the stairs very steep in your home?

I know you had a bone scan (scintigraphy I imagine) and biopsy on suspected cancer in the lung, but what were the liver tests? Not trying to seem nosey, just comparing it to the tests I went through myself.

AFAIK PIP needs the disability or health condition to have already lasted 3 months before someone is eligible, so I don't think waiting till you have a full diagnosis means you will miss out. There is a special set up when a patient is given a short prognosis I believe, like less than 12 months (?) maybe the PP who works for the DWP can confirm.

When I was diagnosed, my prognosis was poor but they didn't tell me that fact till much later and they have never given me a predicted time of survival. They said I had a great response to chemo and that this improved my prognosis.

In my experience they are very evasive about how long we might have because they simply don't know. Too many variables.

What's your new sofa like, what colour did you choose? x

@MrsKypp My new sofa is great but it's upstairs and my bedroom is downstairs, down a steep flight of steps. Im definitely thinking ahead because I only have a short window to swap for the sofa bed. It will be the same style and colour (blue velvet). The downside is that it will take a few months to be delivered.

I have a bone scan and liver MRI on Monday. Apparently the bone scan takes hours as you have to wait for a dye to take effect.

Oh OP I really do feel for you. The hardest thing I found about my diagnosis was that it takes away any sense of security. Suddenly there are no guarantees and everything is based on results. So - and I do know this is going to sound harsh but I don’t mean to be - you’re not going to get the reassurance you’re looking for. It’s beyond the remit of any healthcare professional to give you that reassurance and it would be irresponsible at this stage for them to tell you anything other than to wait for the results of the testing.

Your surgeon will have the test results back for your appointment and will be able to tell you the full diagnosis and will have a treatment plan based on those results. It’s done stage by stage and if my own experience is anything to go by, will involve a mix of surgery, chemotherapy, radiotherapy and various other treatments depending on what your individual cancer responds to. It’s the hardest thing in the world, but you need to wait for those results and to take the advice of the consultant.

Different doctors do handle things differently, but it’s the test results that dictate the treatment. Please don’t think of delaying treatment any more than you need to because it’s likely you’re not going to find much difference in the treatment plan.

You’re vulnerable and you’re scared. Please don't let this influence you - it’s my experience that secondary NHS care is excellent, and I can only tell you that I put myself in the hands of the healthcare experts and have come out the other side of the treatment with a much better prognosis than I ever believed possible.

As hard as it seems now, this time will pass. You need to trust the medics - there’s a multi disciplinary team working on your behalf behind the scenes and the treatment plan will be based on what’s best for you. Relax a bit and let them do their job.xx

I had a bone scan OP, and a liver MRI. The MRI is quite straighforward and will possibly be done before the bone scan as that particular exam involves injection of contrast dye and radioactive tracer. The bone scan takes between 2 and 6 hours. If it’s the same as mine, they draw some blood and add a radioactive tracer then inject it back. After about half an hour they do the initial scan. There is then there's a waiting period of 1-4 hours for the tracer to distribute throughout the body, during which you stay in the hospital and are monitored - they may ask you to drink water to flush the tracer through your system. Then more images are taken, which takes about 30-60 minutes. The tracer does no harm and is flushed out of the body naturally. It sounds scary but everything that’s being done is designed to make sure that they don’t miss anything. That’s where your reassurance lies. The tests are thorough and any treatment plan is based on the results. You have to rely on the science OP - that’s where your peace of mind will come from.

PIP is fast tracked for those who have a terminal diagnosis - 12 months or less. The three month waiting period is waived and benefit is awarded straight away. If OP doesn’t get a terminal diagnosis then it’s worth applying straight away because the waiting time for the application to be processed is likely to be more than three months.

I don't have any advice about cancer but about the wet room OT offered, I would recommend accepting that.

If you have a shower cubicle that's fine while it's just you showering yourself, but if you ever need assistance it's a lot easier for someone to help you if you're not both squeezing into a shower cubicle. Bear in mind if you're feeling weak you might need to sit down on a stool to shower. And there's no lip to step over.

A wet room is also easier to clean than a shower cubicle, which if you end up lacking in energy would be a bonus not to have to clean glass, nooks and crannies etc but be able to just mop or wipe the tiles and use the shower head to spray down everywhere to rinse.

@Rosscameasdoody The bone scan sounds awful but thanks for the info.

@Alstromeria I wanted a walk in shower, not a cubicle. I don't want the bathroom ripped out and am worried about the thing leaking or mould. I'm making enquiries about a grant.

I've swapped the sofa for a sofa bed and they're letting me keep the old sofa until the new one is delivered which is a relief. I'm thinking of staying at my mum's place until I go back for results because otherwise I'm at home completely by myself. At least here, I've got people around and can take my mind off things.

It wasn’t too bad to be honest. The only ‘invasive’ procedures were the taking of the blood and re injecting it when the radioactive tracer had been added. The rest was just scanning - it’s just a bit boring because you’re sitting around waiting a lot of the time. You just need to remember to drink plenty of fluids to flush the tracer out of your system when you’re done.

As far as a wet room is concerned, I have one. The OT at the hospital referred us to social services, who came out to do the initial assessment for a disabled facilities grant, but we opted to do it ourselves because the waiting list was very long, and it was fairly urgent. I’ve had it about three years now and there are no leaks, no mould, and it was installed in just under a week. They moved our toilet from a separate room, removed the existing bath and bowl then reinforced the floor, redirected the plumbing for the new loo, installed a shower tray and drain and then laid the waterproof flooring on top. The new loo and bowl then went in. We opted for waterproof panelling on the walls rather than tiles - no grouting to clean. The water just drains away down the shower drain and a quick mop to dry is all it needs. It’s much easier because you literally walk in, sit down and draw the shower curtain, and away you go with the shower. It’s really easy to keep clean too. If you want any more info about the company I used just PM me.

I think staying with your mum is a good idea - as you say if you have people around you, you won’t be as inclined to dwell on things and the time will go faster. Keeping everything crossed for your results OP, you’re doing a great job - a cancer diagnosis is life changing and you’re coping brilliantly.

I have had several bone scinitgraphy scans and they are painless and not claustrophobic. They aren't noisy either. They just take a lot of time because of the wait between the injection and the scan.

Are you able to lie down relatively flat on a bed or is that painful for you or difficult to breath? If you can, it will be fine. If not, they will try to make you comfortable, or you might like to talk to them beforehand and work out if it's worth taking eg painkillers in advance. Most people but not everyone can lie down flat that is why I am asking.

Honestly, bone scintigraphy scans are fine, you will cope I really do think. Please don't worry about that test.

Is there a cafe in your hospital or nearby where you can have a cuppa while you wait between the injection and scan?

I have also had several liver MRI scans, mine were called MRCP. It's an MRI where they put a sort of blanket type thing over the middle of your body which gives clearer pictures to the radiologist.

I am claustrophobic, so if you are too, you might want to take something like Diazepam beforehand, an hour before the MRI. Your GP can prescribe this.

Can your sister join you for this scan? I always like someone with me for MRIs and for them to stay in the room with me.

You will be given an emergency button to hold in your hand. I pressed it once (out of many, many MRIs I've had) and it stops the scan and brings you out of the machine.

In an MRCP you can't listen to music because they do breathing. I mean a recorded voice tells you to breath in / out and hold your breath. This is a few times throughout the MRI, not all the time. Can you hold your breath at all? If not, tell them in advance so they know.

Good luck x

These are good points. I have a spinal condition and can’t lie flat, and there was a phone number to ring on one of the leaflets sent with the appointment. When I rang they were most helpful - they suggested I take paracetamol beforehand and said they would work with me to make me as comfortable as possible during the scanning process. On the day they were true to their word and it went well. I think forums like these are really helpful because the experience of others can sometimes serve to take away some of the fear of the unknown.

I have no advice to give (my cancer treatment, apart from zoledronic infusions and tablets, was completed 2 years ago and I'm 'in remission'), but I wanted to say how impressed I am that you are concentrating on life's practicalities which must give you some control over your future if only to a smal extent. The major appt with the oncologist, post tests, when decisions and options were discussed and agreed upon was the turning point for me and I found it really helpful to have someone with me to take notes and prompt questions when I looked flummoxed. I still had choices and hopefully you will have as well when the time comes. Fingers tightly crossed for you x

Great news to hear you are in remission @Lifestooshort71 long may that last xxx

How interesting you experienced being given options and making decisions in your treatment. In my first meeting with my oncologist I was presented with my treatment plan. I wasn't given options and I didn't have to make any decisions. My treatment plan was utterly overwhelming, full of multiple chemos, surgery, radiotherapy, immune therapies, injections to make white blood cells because the chemo destroys them etc.

I wasn't asked what I thought or felt and I wasn't given any choices. It was made clear that I had to have the treatment. This was at the Royal Marsden. But every patient is different, and cancer is unendingly complex and diverse.

But even though our experiences of our initial oncologist appointments were so different, I do agree with @Lifestooshort71 that it's helpful to have someone with you. Even if it's just to chat with afterwards about it. like a sort of debrief.

@MrsKypp I was resolutely against having a reconstruction after my radical mastectomy and went against the MDT's advice - I've never regretted that decision. I also decided where my treatment would take place - they presumed it would be at Addenbrookes (an area I didn't know and a journey I felt I couldn't undertake on such a regular basis) but I was able to choose a hospital in the opposite direction in an area where I used to live and felt more comfortable with. Little choices that meant a lot to me.

@Lifestooshort71

It's good you had those choices.

I also had somewhat of a choice with the surgery, but that wasn't for ages after my treatment plan started and wasn't discussed in my initial oncology appointment because it seemed so far off in the future at that point. I had months of chemotherapies before surgery.

Reconstruction or not - you mention you decided against having that. But that is presumably not something that will affect recurrence or prognosis, so should definitely be for the patient to decide (in all cases where reconstruction is considered possible and safe).

Reconstruction or not - you mention you decided against having that. But that is presumably not something that will affect recurrence or prognosis, so should definitely be for the patient to decide (in all cases where reconstruction is considered possible and safe).
Yes, I agree, and I did find out that if I had agreed then the mastectomy would have taken place in a hospital 30 miles away with a totally new team and would have come out of their budget instead. Anyway, they were unable to get clear margins in my rib cage so, if they had done a recon at the same time, that would have complicated matters. Hope all is OK with you.

Thanks all. I noticed changes to the breast so contacted NHS Direct who told me to go to A&E. A&E told me there was nothing they could do so that was a complete waste of time.

I left a message for the BC nurses explaining the changes as things seem to be developing quickly. Im wondering if they can speed up the test results. Im at the hospital Monday so can pop into the clinic if they want to see me and my Dr should be calling Monday morning. However I'm not sure I'll catch her call due to my scans.

@badnews943

I hope you don't mind me joining this thread. I don't have a cancer diagnosis but do have many of the debilitating symptômes you describe. I have basically gone from a fit and active 56 year old with a professional job to a shambling wreck with extrême muscle weakness, fatigue and breathlessness, no appetite coughing and vomiting and suddenly deaf, in about nine months. The NHS have tested me exhaustively and still no answers. I am now under six different specialisms.

Anyway, this isn't about me. The support thing. I really feel for you. Some of it falls woefully short and on a bad day it can feel like a last straw situation. Especially if you are largely alone as we are.

I am so fucking done with being given numbers only to find they are 'signposts' to other organisations I could have googled myself . I don't need a flaming signpost. I need access to someone with knowledge and empathy to help me.

I requested help with pip from a local charity I was 'signposted' to but they have twice cancelled telephone appointments so I may as well do it myself.

I also need some social care and OT input. I can't get in and out of the bath and am terrified of slipping in the shower. I can't do laundry or fill the dishwasher or stand long enough at the open to cook. Still waiting.

The old me would have been on it but when you are ill and weak and not 100 per cent mentally either, it's just too much. It's just cruel.

Re transport . In my area there is a volunteer hospital transport scheme. You have to pay to cover the costs but it is much cheaper than a taxi.

Just wanted to say solidarity 🌺🌺🌺🌺

Just to add the hospital transport is a door to door private car, not a van that travels around dropping people off.

I'm sorry to hear that. I know how difficult it is advocating for yourself when you're not well.

I'll look into hospital transport, thanks.