[Misc] Downer thread - breast cancer.

[cheshunt seagull]

I have no personal experience of family members with breast cancer but for the last 5 years I have received almost constant treatment for incurable blood cancer. This has meant that I have spent many hours in chemotherapy units chatting to other cancer patients. This has shown me that there are so many more excellent outcomes than was the case even a few years ago and that management of side-effects is much more effective. When we hear the word cancer we all have very negative images and preconceptions but the actual reality is much more positive. My experience has been that the period before and the beginning of treatment is the worse but that once it starts you can take comfort from any routine, from being in good hands and knowing that the experience is shared. It is difficult not to imagine worse-case scenarios but there are loads of variables and very real reasons to remain positive. If possible it is best to try and take it one day and stage at a time. All the very best to you and your wife.

 

[US Seagull]

So yesterday my wife had CT scans to determine if the cancer had spread. She hasn't heard anything officially yet, but she can see he results online and it looks bad. Possibly very bad. It mentions a nodule on her lungs and something on her cervix. This is potentially really bad news. If it has spread, this goes from being stage 2 to stage 3 and the survival odds drop precipitously.

Her next appointment has been moved up from next Thursday to next Tuesday. That doesn't feel like something you do when everything is looking okay.

I'm in complete shock right now.

I cried today. First time in a very long time.

 

[dazzer6666]

So yesterday my wife had CT scans to determine if the cancer had spread. She hasn't heard anything officially yet, but she can see he results online and it looks bad. Possibly very bad. It mentions a nodule on her lungs and something on her cervix. This is potentially really bad news. If it has spread, this goes from being stage 2 to stage 3 and the survival odds drop precipitously.

Her next appointment has been moved up from next Thursday to next Tuesday. That doesn't feel like something you do when everything is looking okay.

I'm in complete shock right now.

I cried today. First time in a very long time.

Sorry to hear this but please let the experts deliver the news…….will keep everything crossed for you that they are positive and don’t lose hope as the prognosis may be much, much better than your worst fears. As for crying, I completely get that - I did it more than once (uncontrollably sometimes) when my sister was going through her treatment. FWIW we have just been on holiday with our good friends, one of whom was at stage 3 several years ago, had a double mastectomy and other bits removed and has been completely clear now for years and lives a normal life with no complications. Wishing you all the best

 

[Biscuit Barrel]

Good luck on your next appointment. Keeping everything crossed for you both.

 

[Goldstone1976]

While, as I said before, I have no experience of breast cancer, I do have personal and direct experience of some very serious and potentially terminal illnesses.

If the results of scans are made available to the patient prior to them being explained by the consultant, it is both inevitable that the patient will look and also try to diagnose.

As my consultant told me on many occasions ‘try not to do that. I have 20 years training in looking at CT scans and analysing the implications of what I see, you have precisely none. I know what I’m doing; you don’t. You’ll see things that are totally innocuous and think it’s bad. Equally, you’ll miss things that may be concerning.’

Honestly, I think it’s amongst the best advice I’ve ever received.

I continue to wish your family the very best through what will inevitably be very difficult times. Hopefully, all will turn out significantly better than you currently fear.

 

[Questions]

So yesterday my wife had CT scans to determine if the cancer had spread. She hasn't heard anything officially yet, but she can see he results online and it looks bad. Possibly very bad. It mentions a nodule on her lungs and something on her cervix. This is potentially really bad news. If it has spread, this goes from being stage 2 to stage 3 and the survival odds drop precipitously.

Her next appointment has been moved up from next Thursday to next Tuesday. That doesn't feel like something you do when everything is looking okay.

I'm in complete shock right now.

I cried today. First time in a very long time.

My wife had bowel cancer which spread to most of her reproductive organs . It had gone to 3 or 4 of her lymph nodes. She had sepsis and was in intensive care US Seagull. She had HIPEC treatment which is an immersion in hot chemo during her 12 hour operation.
It’s been tough US but she’s amazing. She’s cancer free and no one thought that that could happen. (Stage 3)
I’m saying all this to you to let you know that we’re all thinking of you as I know how you’re feeling. Stay strong and positive.
Ps she’s 2 years NED. I’m positive you’ll understand ‘No evidence of disease’ In a short while.

 

[BLOCK F]

So yesterday my wife had CT scans to determine if the cancer had spread. She hasn't heard anything officially yet, but she can see he results online and it looks bad. Possibly very bad. It mentions a nodule on her lungs and something on her cervix. This is potentially really bad news. If it has spread, this goes from being stage 2 to stage 3 and the survival odds drop precipitously.

Her next appointment has been moved up from next Thursday to next Tuesday. That doesn't feel like something you do when everything is looking okay.

I'm in complete shock right now.

I cried today. First time in a very long time.

Sorry to hear that, US Seagull.
It is easy to say, but less easy to do, try to stay positive and strong. Her appointment is next Tuesday, when you will be told what the scans mean. Hopefully, things will not be as bad as you may fear. Not knowing is often worse than knowing what you are dealing with.
Best wishes to you and your wife from me and my wife.

 

[Zeberdi]

Geez - I’m shocked the results were made available online if they are as bad as you fear - in my experience it has always been a telephone call from the Consultant first or a face to face but that is the UK - at least that was the case with my cancer diagnosis and liver damage etc. I’m hoping my second pancreas scan next week will also be the same. I think it would be an idea to phone your family practitioner in the morning and see if you can speak to them - perhaps they will interpret some of the wording for you (or see if you can speak to one of the nurses in the oncology clinic) .

Try and not to jump to any conclusions - Dr Google is NOT your friend, sometimes too little information is a dangerous thing.

The survival rate of a primary tumour Stage 3 breast cancer btw is still very high - and hasn’t metastasised to other parts of the body but locally spread - all the ladies bar one I mentioned above had stage 3 and got their all clear and still going strong 20 years later.

I found this website very good while I was waiting for various biopsy and scan results - https://cancerchat.cancerresearchuk.org/f/introduce-yourself - I found there is always someone further ahead in the process who can help

Perhaps this one might help the both of you?

Cancer Survivors Network

csn.cancer.org

Lots of kind thoughts heading your way …

 

[chickens]

So yesterday my wife had CT scans to determine if the cancer had spread. She hasn't heard anything officially yet, but she can see he results online and it looks bad. Possibly very bad. It mentions a nodule on her lungs and something on her cervix. This is potentially really bad news. If it has spread, this goes from being stage 2 to stage 3 and the survival odds drop precipitously.

Her next appointment has been moved up from next Thursday to next Tuesday. That doesn't feel like something you do when everything is looking okay.

I'm in complete shock right now.

I cried today. First time in a very long time.

I’m really sorry to hear this. All I can say to counter your completely natural fears are that unless you or your wife are trained in interpreting CT scan results, I’d be wary of interpreting them yourselves.

Nodules are (I believe) common and do not necessarily indicate anything bad (loads of us have them internally and they often cause no issues)

Similarly, whatever was spotted around the cervix may be benign, and the doc may have moved your appointment up due to a cancellation, or simply to minimise the time between scan and being able to communicate the results.

Your shock and tears are the absolutely normal human reaction to what’s going on. It’s natural for the mind to spiral toward potential worst outcomes, but I would let the doc give you both a clearer picture at the next appointment.

Wishing the best for both of you.

 

[US Seagull]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

 

[dazzer6666]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

No need to apologise…….most of us would feel the same in your situation. Take care.

 

[US Seagull]

Geez - I’m shocked the results were made available online if they are as bad as you fear - in my experience it has always been a telephone call from the Consultant first or a face to face but that is the UK - at least that was the case with my cancer diagnosis and liver damage etc. I’m hoping my second pancreas scan next week will also be the same. I think it would be an idea to phone your family practitioner in the morning and see if you can speak to them - perhaps they will interpret some of the wording for you (or see if you can speak to one of the nurses in the oncology clinic) .

Try and not to jump to any conclusions - Dr Google is NOT your friend, sometimes too little information is a dangerous thing.

The survival rate of a primary tumour Stage 3 breast cancer btw is still very high - and hasn’t metastasised to other parts of the body but locally spread - all the ladies bar one I mentioned above had stage 3 and got their all clear and still going strong 20 years later.

I found this website very good while I was waiting for various biopsy and scan results - https://cancerchat.cancerresearchuk.org/f/introduce-yourself - I found there is always someone further ahead in the process who can help

Perhaps this one might help the both of you?

Cancer Survivors Network

csn.cancer.org

Lots of kind thoughts heading your way …

Thanks for all your kind thoughts Zeberdi, I do appreciate them.

On the results being available thing, yeah, it strikes me as weird and not necessarily productive. They have a big push to digitalize all your medical records. Which can be good. When you come back from the doctors and can't remember exactly what it was he said you had, it's nice to be able to go take a quick look (and then find a whole bunch of scary sounding stuff that they didn't tell you - but I digress). I had a skin cancer patch removed several years ago and I can never remember what they called it. It wasn't the bad melanoma and it was quickly and easily dealt with via something called Mohs surgery, which is barely surgery at all TBH. But I always get asked when filling out medical history and can never remember what it was.

I really think they ought to have the option to block at least some stuff from the patient until a medical professional has had a chance to look over it and communicate directly with the patient.

Having said that, I had a CT of my noggin some time last year (I have headaches - a lot) and my doctor never got back to me about it. But I can see the results online and it says everything is normal so...

 

[Questions]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

It’s so difficult when you are diagnosed and words like metastatic come into play and you have to read up on them to understand what they are talking about. It’s so scary but like I say stay strong and they’ll see you right I’m sure.

 

[Greg Bobkin]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

Don't ever apologise for sharing your feelings. Hopefully the posters on here - and the nurse has reassured you and the family.

As I said before, try not to worry about things you might not need to worry about. We're currently waiting on some answers for something going on with Princess Bobkin that may or may not be related to a previously diagnosed condition. It's all a bit complicated, frustrating and - ultimately - sad, but until we know exactly what's going on, we don't know what to think or do.

Good luck to you all.

 

[Lady Whistledown]

Hi @US Seagull

My personal experience of this sort of scenario: my husband was diagnosed with renal cell carcinoma on Christmas Day three years ago.

The thing I couldn't get out of my head for days after his diagnosis was the feeling that I had this terrible sword of doom hanging over me: the thought that the worst thing in the world was probably going to happen and I had no idea when it would be. I just had to live with it. I just kept going over and over the what ifs, wondering how on earth I could look forward, how I could make even the smallest plans for life knowing this was now a thing. I can see you're already doing that in some ways- wondering how you'll cope if if the worst happens, how your daughter will get by and so on. I felt like my whole life had come to a crashing halt in one moment, and that I would be standing still forever. And yes, I went through the whole "f***, am I going to be a widow at 44?" scenario, so many times (sorry for the sweary bit but if anything justifies a quick F bomb, this is it). I want to reassure you that it's totally normal to feel like that in this situation.

The one person who helped me focus my attentions back on to where they needed to be was a work colleague whose partner had survived cancer a few years previously. I remember saying to her "How on earth do I live my life now, not knowing if or when the worst is going to happen?". She said the way she'd learned to look at it was: none of us know when our number is up. She said "you could spend months or years worrying about the worst case scenario, about losing him, and failing to live your life in the meantime, and yet you could be hit by a bus yourself tomorrow".

It's a bit blunt, but I thought, yeah, she's right. I've just got to focus on what I need to do, and to deal with this however is best for me, and for him, and for everyone else who really matters; then whatever will be, will be.

As humans, we don't generally deal well with uncertainty, and something like a cancer diagnosis is the ultimate uncertainty. Couple it with all the other emotions, like "why me?", and it's not surprising that it can screw you up. I very much hope you get some positive news soon

 

[Bry Nylon]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

I’m rooting for you and your family @US Seagull. Reading this thread has brought a lot of things into their rightful perspective and made me, for one, realise just how much I take for granted each day and how much needless energy I expend on the inconsequential and trivial things. I’m going to try and change that.

I’m not sure how much, if any, difference it makes when someone you have never met says they are thinking of you and your family; but in the hope that it does make even the tiniest difference, please know that I am.

 

[US Seagull]

I’m rooting for you and your family @US Seagull. Reading this thread has brought a lot of things into their rightful perspective and made me, for one, realise just how much I take for granted each day and how much needless energy I expend on the inconsequential and trivial things. I’m going to try and change that.

I’m not sure how much, if any, difference it makes when someone you have never met says they are thinking of you and your family; but in the hope that it does make even the tiniest difference, please know that I am.

It sure does make a difference. Thanks Bry and everybody on this thread.

 

[Brovion]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

Don't apologise, rant away, let off steam, we all know you're going through hell and if posting on here (and reading the responses) helps just one tiny bit then keep doing it.

 

[TWOCHOICEStom]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

This sounds like a very similar to the experience we had with my Mum. The initial CT scan showed up two or three things including something on her liver which sounded very scary at the time. It lead to more tests, biopsies, further scans. They all came back clear.

They cast a very wide net in the beginning to make sure they don't miss anything. Which makes a lot of sense, but it really is a horrible feeling waiting to see the extent of it all.

 

[lost in london]

Thanks everybody. My wife just came home and was on the phone with the nurse practitioner that's been her primary contact so far. She talked us off the ledge a bit telling us that CT scans can turn up all kinds of stuff and it isn't necessarily all bad. Or even maybe bad at all. They want to follow up on the lungs in about 3 months. Meanwhile they want an MRI and pelvic exam in the near future to figure out what's going on there.

So I apologize for going off a little half cocked there. I know we really shouldn't do that.

We'll know more after Tuesday, and hopefully have a solid treatment plan. That's what really is the hardest part (after the previous hardest part of simply not knowing). Not having a plan of action. Feeling like we're doing nothing when we should be doing something.

Feel for you buddy. My wife had stage 3 grade 3 breast cancer, 6 years or so ago - mastectomy, 8 rounds of chemo, radiotherapy. Our kids were 4 and 6. A few thoughts:

- Others may take different approaches but I felt my job was to keep everything moving for the family, be positive, measured and as best I could be a rock for my wife and kids; at home at least my ego had to take a bit of a back seat for a while; this is all about her now at home but lean on your friends when you need them. There are tricky times ahead, but a lot of the time is relatively normal - school runs, dinner with friends, packing the dishwasher etc etc. Life goes on around the treatments and various after effects and you have to keep the family ship sailing along.

- My wife had always struggled having blood tests; having a port put in was really helpful for the chemo appointments.

- You may have to help with some semi-surgical things at home; not a load of fun to be frank, but better in my view you do it at home in a loving way as a team rather than sending your wife off to hospital for something that could be done at home (as I heard of some people doing).

- Everything is overwhelming, make sure as far as possible someone is with her at every hospital appointment and maybe take notes, there is a lot to take in and decisions to make.

All the best, treatment for breast cancer is incredible these days.