[Misc] Downer thread - breast cancer.

[CroydonSeagull]

I've only just seen this thread somehow. So sorry you are going through this right now. Goes without saying that i send my very best wishes to you all. Just keep trying your best for your wife and daughter, and I would say it is perfectly fine to break down now and then rather than keeping everything bottled up, it is all very scary and overwhelming. It is really important to keep talking with both of them. Hoping for some positive news from the next consultation. Keep strong, we are all standing with you!

 

[Zeberdi]

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.

This is true but I was recently told by one of my Consultants recently, CT scans often pick up on things the radiologist was not requested to look for in the first place too— it was a CT scan on my damaged liver and kidneys following Covid which originally picked up a potentially malignant pancreatic cyst a few months back that was un- symptomatic but could be lifesaving if treated caught early enough. (I will know more after another scan next week).

The point is, CT scans can actually get a life-saving diagnosis on things the doctors weren’t even aware of when booking to scan. I’ve had one CT scan after another in the past 6 mnths because they keep finding new things - the one thing the NHS has got brilliant at is ordering diagnostic tests with a much lower threshold of symptoms these days - the imaging is so advanced these days, it would be impossible for a CT not to pick up on a few health issues in most adults

 

[US Seagull]

I was hoping to update this thread with some more positive news, but I'm not sure what our recent developments ultimately mean.

We met with the surgical oncologist and she was very nice and spent a good chunk of time with us discussing the diagnosis and treatment. The plan was/is for a partial mastectomy on the right breast. Taking the top of the breast off (including the nipple) along with removing one or more lymph nodes and then after pathology on the removed tissue we would decide what to do next. Probably chemo, possibly radiation.

On the good side, since that discussion we got the results from the genetic testing and she does not have the BRCA gene which would have suggested a double mastectomy and would require my daughter to probably get tested so we'd know what her risk might be. So that's a positive.

However, my wife had an MRI and that identified a lymph node in her abdomen which is abnormal and suspicious, although it also said the nodules on her cervix do not have the typical appearance of cervical cancer and might be something else. Might be. She has a pelvic exam tomorrow and an ultrasound with that too. A call from the nurse today however, said that their "tumor board" met and discussed her case. They aren't happy about that lymph node and won't go forward with the breast surgery until they know more. They now want a PET scan to image that more.

I don't know what any of this all ultimately means. If that other node is also cancer, where else might it be? It's kind of a long way from the breast and it's weird that it skipped all the nodes in between? Is it the same cancer? Is it something completely separate? If it is, or isn't how do we treat that? I honestly don't know.

We'd really been hoping we might knock out the surgery this month and be on our way to recovery and this is, at best, a delay. At worse, a set back.

Hopefully we can get the PET scheduled soon and get moving forward again.

 

[Zeberdi]

Continuing to send you warm support and hoping for a manageable outcome for you both. Incredibly difficult time for your family. It is at least good news that your daughter doesn’t have to face a horrendous choice to opt for a double mastectomy. Keep us updated

 

[US Seagull]

Continuing to send you warm support and hoping for a manageable outcome for you both. Incredibly difficult time for your family. It is at least good news that your daughter doesn’t have to face a horrendous choice to opt for a double mastectomy. Keep us updated

Thanks Zeb. Best wishes to you too with your own issues.

 

[Motogull]

I was hoping to update this thread with some more positive news, but I'm not sure what our recent developments ultimately mean.

May I suggest a thorough check to ensure they move to a treatment course they are more convinced by? Extra investigations really hint at leaving no stone unturned. It sounds like your wife is in good hands.

 

[US Seagull]

May I suggest a thorough check to ensure they move to a treatment course they are more convinced by? Extra investigations really hint at leaving no stone unturned. It sounds like your wife is in good hands.

Yeah, I try to keep telling myself that. As upsetting as learning these things can be, it's better than not knowing. Not knowing doesn't change anything. Ignoring things, sadly, doesn't make them go away. It's better to know everything and treat everything than find out months or years later that they missed something.

 

[dazzer6666]

Yeah, I try to keep telling myself that. As upsetting as learning these things can be, it's better than not knowing. Not knowing doesn't change anything. Ignoring things, sadly, doesn't make them go away. It's better to know everything and treat everything than find out months or years later that they missed something.

Sounds like she’s getting the best, most meticulous care available…….as distressing and helpless as it feels, let the experts do their thing. Keeping everything crossed for you.

 

[Weststander]

Yeah, I try to keep telling myself that. As upsetting as learning these things can be, it's better than not knowing. Not knowing doesn't change anything. Ignoring things, sadly, doesn't make them go away. It's better to know everything and treat everything than find out months or years later that they missed something.

Imho you’re doing all the right things, optimising the skill and guidance of multiple experts as early as possible. Inertia would only have given a less favourable prognosis.

As always, all the best to your wife.

 

[Cotton Socks]

I was hoping to update this thread with some more positive news, but I'm not sure what our recent developments ultimately mean.

We met with the surgical oncologist and she was very nice and spent a good chunk of time with us discussing the diagnosis and treatment. The plan was/is for a partial mastectomy on the right breast. Taking the top of the breast off (including the nipple) along with removing one or more lymph nodes and then after pathology on the removed tissue we would decide what to do next. Probably chemo, possibly radiation.

On the good side, since that discussion we got the results from the genetic testing and she does not have the BRCA gene which would have suggested a double mastectomy and would require my daughter to probably get tested so we'd know what her risk might be. So that's a positive.

However, my wife had an MRI and that identified a lymph node in her abdomen which is abnormal and suspicious, although it also said the nodules on her cervix do not have the typical appearance of cervical cancer and might be something else. Might be. She has a pelvic exam tomorrow and an ultrasound with that too. A call from the nurse today however, said that their "tumor board" met and discussed her case. They aren't happy about that lymph node and won't go forward with the breast surgery until they know more. They now want a PET scan to image that more.

I don't know what any of this all ultimately means. If that other node is also cancer, where else might it be? It's kind of a long way from the breast and it's weird that it skipped all the nodes in between? Is it the same cancer? Is it something completely separate? If it is, or isn't how do we treat that? I honestly don't know.

We'd really been hoping we might knock out the surgery this month and be on our way to recovery and this is, at best, a delay. At worse, a set back.

Hopefully we can get the PET scheduled soon and get moving forward again.

Would it sound really weird to say I was thinking about you both this morning? I don't know what any of it means but it's really good that they are checking everything. Take each day as it comes.

 

[Brovion]

Continuing to send you warm support and hoping for a manageable outcome for you both. Incredibly difficult time for your family. It is at least good news that your daughter doesn’t have to face a horrendous choice to opt for a double mastectomy. Keep us updated

Can't really say much more than this. At least it wasn't total bad news, but it's obviously very easy for me to say 'take the positives'. Appreciate this must be a bad time for you all.

 

[Guinness Boy]

Best of luck @US Seagull we’re all hoping for the best for you.

 

[lost in london]

Tough news to get but focus on the positives as much as possible (and there are some in that news), stay strong for your family and take each step in turn. It's hard but try not to get too far ahead of yourself with the worries about what might be. You are in the best care and they will sort this.

 

[US Seagull]

PET scan today. My wife is terrified of what it might find. She convinced herself of the worst and, to be honest, I can't say she's been entirely wrong so far. They stick a radioactive dye in you that is supposed to accumulate in tissues that are rapidly metabolizing (something cancers tend to do). So if that node lights up, it's likely cancerous. If it doesn't, well, that doesn't mean it isn't, but, I don't really know what happens from there. If her whole body lights up like a Christmas tree, we are in a lot of trouble.

On the bright side, she met with her OB/GYN for an exam and another ultrasound and she (the doctor) was of the opinion that there is nothing going on down there. Whatever is going on with the one remote lymph node, it's not coming from her uterus or cervix. Also her pap smear was normal too.

 

[Brovion]

...

On the bright side, she met with her OB/GYN for an exam and another ultrasound and she (the doctor) was of the opinion that there is nothing going on down there. Whatever is going on with the one remote lymph node, it's not coming from her uterus or cervix. Also her pap smear was normal too.

That's good. Fingers crossed for the rest.

 

[TWOCHOICEStom]

On the bright side,

The bright side might just be a lot brighter than you can see right now. Casting that wide net is scary but it's the right thing to do and will mean the best possible, most effective treatment.

Keep going!

 

[Wardy's twin]

PET scan today. My wife is terrified of what it might find. She convinced herself of the worst and, to be honest, I can't say she's been entirely wrong so far. They stick a radioactive dye in you that is supposed to accumulate in tissues that are rapidly metabolizing (something cancers tend to do). So if that node lights up, it's likely cancerous. If it doesn't, well, that doesn't mean it isn't, but, I don't really know what happens from there. If her whole body lights up like a Christmas tree, we are in a lot of trouble.

On the bright side, she met with her OB/GYN for an exam and another ultrasound and she (the doctor) was of the opinion that there is nothing going on down there. Whatever is going on with the one remote lymph node, it's not coming from her uterus or cervix. Also her pap smear was normal too.

Keep positive even when things seem to be going badly. Difficult I know but my wife had a problem which was then diagnosed as lymphoma , supposedly a cancer which is an easy one to deal with(relatively) but nothing was working for her then CAR-T was approved for use in UK and it worked.

 

[US Seagull]

Keep positive even when things seem to be going badly. Difficult I know but my wife had a problem which was then diagnosed as lymphoma , supposedly a cancer which is an easy one to deal with(relatively) but nothing was working for her then CAR-T was approved for use in UK and it worked.

Thanks Wardy. Glad to hear your wife is recovering.

 

[AmexRuislip]

PET scan today. My wife is terrified of what it might find. She convinced herself of the worst and, to be honest, I can't say she's been entirely wrong so far. They stick a radioactive dye in you that is supposed to accumulate in tissues that are rapidly metabolizing (something cancers tend to do). So if that node lights up, it's likely cancerous. If it doesn't, well, that doesn't mean it isn't, but, I don't really know what happens from there. If her whole body lights up like a Christmas tree, we are in a lot of trouble.

On the bright side, she met with her OB/GYN for an exam and another ultrasound and she (the doctor) was of the opinion that there is nothing going on down there. Whatever is going on with the one remote lymph node, it's not coming from her uterus or cervix. Also her pap smear was normal too.

A fear of cancer is not great and the thought of all the procedures that ensue are not better.
I found the best thing was to take things one step at a time and try not to get bogged down with the info.
I hope all goes well

 

[Midget]

I've come to this thread late and don't have much to offer from personal experience I'm afraid, just to wish you, Mrs and Miss US Seagull all the best.