[Misc] Downer thread - breast cancer.

[Worried Man Blues]

All the best to you both, love from Wales

 

[poidy]

You and your partner have my deepest sympathy as I know what you’re going through.

2016 my partner got diagnosed with Ductal Carcinoma in Situ - a sort of lesser Cancer where the cells remain within the ducts. Three operations to get clear margins and that was that aside from annual mammograms thereafter.

Fast forward to 2021 and after her annual scan, we were both shocked to discover cancer had spread to the main breast tissue. A mastectomy came soon after, followed by 18 weeks of Chemotherapy which was really, really tough.

We had a major scare only 3 weeks ago, following her January mammogram results and a telephone call from the hospital. Recalled to the hospital the very next day for more scans and a consultation, we were both fearing the worst.

Thankfully and by the grace of god, it was just scar tissue from her reconstruction operation, but my god that was a terrifying 24 hours.

US Seagull (or indeed anyone else dealing with Breast Cancer as the other half) if you ever want any advise give me a shout.

 

[Harry Wilson's tackle]

You and your partner have my deepest sympathy as I know what you’re going through.

2016 my partner got diagnosed with Ductal Carcinoma in Situ - a sort of lesser Cancer where the cells remain within the ducts. Three operations to get clear margins and that was that aside from annual mammograms thereafter.

Fast forward to 2021 and after her annual scan, we were both shocked to discover cancer had spread to the main breast tissue. A mastectomy came soon after, followed by 18 weeks of Chemotherapy which was really, really tough.

We had a major scare only 3 weeks ago, following her January mammogram results and a telephone call from the hospital. Recalled to the hospital the very next day for more scans and a consultation, we were both fearing the worst.

Thankfully and by the grace of god, it was just scar tissue from her reconstruction operation, but my god that was a terrifying 24 hours.

US Seagull (or indeed anyone else dealing with Breast Cancer as the other half) if you ever want any advise give me a shout.

My best wishes. Puts my travails (which are shit, but resolvable with time and money) into perspective.

 

[US Seagull]

First chemotherapy session was this morning. Seemed to go off without a hitch and so far so good. Fingers crossed. We'll see how it goes over the next few days.

Chemo is going to be a lot. She has sessions every two weeks for eight weeks (i.e. 4 rounds) with two different drugs. Then she'll have weekly sessions of a different drug for 12 weeks. So, all going well, it'll be some time in August when we can (hopefully) wrap that up.

Then they'll be radiation to finish things off. Every day for 5-6 weeks.

 

[Zeberdi]

First chemotherapy session was this morning. Seemed to go off without a hitch and so far so good. Fingers crossed. We'll see how it goes over the next few days.

Chemo is going to be a lot. She has sessions every two weeks for eight weeks (i.e. 4 rounds) with two different drugs. Then she'll have weekly sessions of a different drug for 12 weeks. So, all going well, it'll be some time in August when we can (hopefully) wrap that up.

Then they'll be radiation to finish things off. Every day for 5-6 weeks.

Yep - it’s a long, tough journey you are on for sure but glad it went ok this morning - that’s a small step forward on the path to recovery at least but the length and intensity of treatment sounds horrendous.

Stay strong both of you and I’m sure you will find support on NSC any time you need to vent. Rooting for you both. For your wife X

 

[US Seagull]

Yep - it’s a long, tough journey you are on for sure but glad it went ok this morning - that’s a small step forward on the path to recovery at least but the length and intensity of treatment sounds horrendous.

Stay strong both of you and I’m sure you will find support on NSC any time you need to vent. Rooting for you both. For your wife X

Thanks Zeb. Hope your own challenges are working out for you too.

 

[Wardy's twin]

First chemotherapy session was this morning. Seemed to go off without a hitch and so far so good. Fingers crossed. We'll see how it goes over the next few days.

Chemo is going to be a lot. She has sessions every two weeks for eight weeks (i.e. 4 rounds) with two different drugs. Then she'll have weekly sessions of a different drug for 12 weeks. So, all going well, it'll be some time in August when we can (hopefully) wrap that up.

Then they'll be radiation to finish things off. Every day for 5-6 weeks.

My wife had chemo every 3 weeks, for the first week of the 3 week cycle she was on steroids so was 'lower' at start of week 2 rather than straight after the chemo.

 

[US Seagull]

My wife had chemo every 3 weeks, for the first week of the 3 week cycle she was on steroids so was 'lower' at start of week 2 rather than straight after the chemo.

Yeah, that's about what we expect. It's going to be up and down with the low hitting in between sessions in terms of weaker immunity and fatigue. We'll see how it goes. She has to go back for a check up next week so they can see how she's doing. She has a thing attached to her at the moment that is supposed to automatically inject her with a drug to boost her white blood cell production tomorrow afternoon. Kinda neat bit of tech. Saves a trip back for a shot.

 

[Wardy's twin]

Yeah, that's about what we expect. It's going to be up and down with the low hitting in between sessions in terms of weaker immunity and fatigue. We'll see how it goes. She has to go back for a check up next week so they can see how she's doing. She has a thing attached to her at the moment that is supposed to automatically inject her with a drug to boost her white blood cell production tomorrow afternoon. Kinda neat bit of tech. Saves a trip back for a shot.

There have been some amazing break throughs in technology. My wife ended up having CAR-T treatment with her T-cells sent to the US for genetic modification, not sure if that makes her part American....

Stay strong...

 

[US Seagull]

I've been meaning to update this for a very long time, but always was caught between not wanting to seem like I'm moaning and not finding the time to do it. I know lots of other people have health challenges, so I've not wanted to pile on too much. But now, I'm pleased to say, we are at the end of our journey. At least the active part of it. Now it's just lots of waiting with regular testing to make sure the cancer has gone, hopefully for good.

So we started off with chemo on what they call the AC-T regimen. This started with 8 weeks of "AC" (Adriamycin, aka the Red Devil and cyclophosphamide) given every two weeks. The first dose wasn't too bad. The second dose was when the hair really noticeably started to fall out and we shaved her head. To be fair, Mrs. Seagull was an absolute trooper with the hairless look and looked better bald than I do. She really wasn't bothered by it at all. It's just hair. Aside from the hair, this was about when the other side-effects really started to kick in. The most alarming was that it started to cause tachycardia. She complained of her heart racing and feeling like it was about to pound out of her chest. It was very alarming and we ended up in the ER with it at least twice over those first two months. It was frustratingly hard to get to see an actual cardiologist, but eventually we did towards the end of the 8 week cycle and with more tests he said that it's probably the Adriamycin irritating the heart and that it would probably clear up once she was off it. To our great relief, after a few weeks off it, her heart had stopped misbehaving. Fun fact, Adriamycin is known to be cardiotoxic and their is actually a lifetime limit to how much you can have of it. Fun. Anyway, the third dose was bad for other side effects too, mostly fatigue and the fact that it dropped her white blood cell count to alarmingly low levels, lower with each does. The fourth, and thankfully last, dose totally knocked her on her ass. Could barely get out of bed for a couple of days there. At least we never really had any problems with nausea.

Once we were done with that she was switched to the T phase, that is Taxol. This was fortunately a lot easier. It was scheduled to run for 12 weeks, but the doc decided to end it after 10 weeks. Taxol doesn't knock out your immune system like the AC part did and she was actually able to start working again. What it is, however, is nerve toxic and she started to get, developing more other time, neuropathy. Nerve pain in her fingers and toes. It wasn't constant, but did get worse with each dose. She described it as feeling like lightning strikes. This was actually why the doctor decided to end the treatment a couple of weeks early. She said that the neuropathy could become permanent if we kept going and my wife had had a dose that ought to be sufficient. Some people have allergic reactions to Taxol requiring them to reduce the dose, but we didn't have that problem. We got the full dose for all 10 weeks, so that should be enough. With Taxol they also give you steroids and my wife was alarmed by the weight gain it caused. Since she's come off the Taxol though, a lot of it has fallen away already.

With chemo out the way, we started on the radiation, the last session of which was last Thursday. This was every week day for 25 days (actually 26 since we had to skip a day for Labor day). It was an annoyance to have to drive all the way out to the facility every day, but otherwise the treatment was fairly easy. She had to be measured up and tattooed before they started the treatment (they are several tiny dots that are no bigger than a freckle, sadly nothing super cool) and she did complain a little bit about the awkward position they had to have her in during the treatment. Holding her arm up over her head for about 15 minutes and staying completely still caused some discomfort, at least at the start. As the treatment went on, her skin started to turn a little red. The doctor last week said after the treatment was done that it would probably get worse for a bit, and then get better. And that's what it's done. She has gotten really red over the last couple of days, like a very bad sunburn and is now pretty uncomfortable especially under the breast where she has burnt skin sitting on burnt skin. But it is, I think, already starting to get better so hopefully that won't bother her for too many more days. Her hair has started to grow back in and is looking good. A little more grey than before but, of course, it hasn't been colored since last year so who knows how much real grey was there before. It's looking pretty good even while it's still very short. She's thinking she might just keep it short going forward and I'm okay with that.

So that's been the journey so far. She'll have another scan coming up soon to take another look at her lungs. There was a nodule there that was suspect previously, but following up on that earlier showed no apparent change. They'll check that one more time before deciding it's nothing to worry about (hopefully). Then in February they'll do another mammogram and, hopefully, that'll be clear. She'll also be starting a course of pills that she'll take for 5 years that is supposed to reduce the chance of reoccurrence. Hopefully that'll not cause too many side effects. My understanding is that they don't definitely declare somebody as "cured" until 5 years after treatment, so now we just wait...I guess.

I'll just finish by saying how much I appreciated the support on this board. It really did make a difference to me to have a place where I could pour out my fears and my frustrations. Thanks to everybody for all the well wishes.

UTA

 

[Herr Tubthumper]

I've been meaning to update this for a very long time, but always was caught between not wanting to seem like I'm moaning and not finding the time to do it. I know lots of other people have health challenges, so I've not wanted to pile on too much. But now, I'm pleased to say, we are at the end of our journey. At least the active part of it. Now it's just lots of waiting with regular testing to make sure the cancer has gone, hopefully for good.

So we started off with chemo on what they call the AC-T regimen. This started with 8 weeks of "AC" (Adriamycin, aka the Red Devil and cyclophosphamide) given every two weeks. The first dose wasn't too bad. The second dose was when the hair really noticeably started to fall out and we shaved her head. To be fair, Mrs. Seagull was an absolute trooper with the hairless look and looked better bald than I do. She really wasn't bothered by it at all. It's just hair. Aside from the hair, this was about when the other side-effects really started to kick in. The most alarming was that it started to cause tachycardia. She complained of her heart racing and feeling like it was about to pound out of her chest. It was very alarming and we ended up in the ER with it at least twice over those first two months. It was frustratingly hard to get to see an actual cardiologist, but eventually we did towards the end of the 8 week cycle and with more tests he said that it's probably the Adriamycin irritating the heart and that it would probably clear up once she was off it. To our great relief, after a few weeks off it, her heart had stopped misbehaving. Fun fact, Adriamycin is known to be cardiotoxic and their is actually a lifetime limit to how much you can have of it. Fun. Anyway, the third dose was bad for other side effects too, mostly fatigue and the fact that it dropped her white blood cell count to alarmingly low levels, lower with each does. The fourth, and thankfully last, dose totally knocked her on her ass. Could barely get out of bed for a couple of days there. At least we never really had any problems with nausea.

Once we were done with that she was switched to the T phase, that is Taxol. This was fortunately a lot easier. It was scheduled to run for 12 weeks, but the doc decided to end it after 10 weeks. Taxol doesn't knock out your immune system like the AC part did and she was actually able to start working again. What it is, however, is nerve toxic and she started to get, developing more other time, neuropathy. Nerve pain in her fingers and toes. It wasn't constant, but did get worse with each dose. She described it as feeling like lightning strikes. This was actually why the doctor decided to end the treatment a couple of weeks early. She said that the neuropathy could become permanent if we kept going and my wife had had a dose that ought to be sufficient. Some people have allergic reactions to Taxol requiring them to reduce the dose, but we didn't have that problem. We got the full dose for all 10 weeks, so that should be enough. With Taxol they also give you steroids and my wife was alarmed by the weight gain it caused. Since she's come off the Taxol though, a lot of it has fallen away already.

With chemo out the way, we started on the radiation, the last session of which was last Thursday. This was every week day for 25 days (actually 26 since we had to skip a day for Labor day). It was an annoyance to have to drive all the way out to the facility every day, but otherwise the treatment was fairly easy. She had to be measured up and tattooed before they started the treatment (they are several tiny dots that are no bigger than a freckle, sadly nothing super cool) and she did complain a little bit about the awkward position they had to have her in during the treatment. Holding her arm up over her head for about 15 minutes and staying completely still caused some discomfort, at least at the start. As the treatment went on, her skin started to turn a little red. The doctor last week said after the treatment was done that it would probably get worse for a bit, and then get better. And that's what it's done. She has gotten really red over the last couple of days, like a very bad sunburn and is now pretty uncomfortable especially under the breast where she has burnt skin sitting on burnt skin. But it is, I think, already starting to get better so hopefully that won't bother her for too many more days. Her hair has started to grow back in and is looking good. A little more grey than before but, of course, it hasn't been colored since last year so who knows how much real grey was there before. It's looking pretty good even while it's still very short. She's thinking she might just keep it short going forward and I'm okay with that.

So that's been the journey so far. She'll have another scan coming up soon to take another look at her lungs. There was a nodule there that was suspect previously, but following up on that earlier showed no apparent change. They'll check that one more time before deciding it's nothing to worry about (hopefully). Then in February they'll do another mammogram and, hopefully, that'll be clear. She'll also be starting a course of pills that she'll take for 5 years that is supposed to reduce the chance of reoccurrence. Hopefully that'll not cause too many side effects. My understanding is that they don't definitely declare somebody as "cured" until 5 years after treatment, so now we just wait...I guess.

I'll just finish by saying how much I appreciated the support on this board. It really did make a difference to me to have a place where I could pour out my fears and my frustrations. Thanks to everybody for all the well wishes.

UTA

Jeez. Tough times. I really do wish you both all the best.

 

[Berty23]

Thanks for the update. She sounds like a proper trooper. People always forget the partner in situations like this but it is brutal being the person going through it with your loved one so all the best wishes to you both.

The only advice I ever give people with loved ones going through cancer treatment is to enjoy every moment you can. It is now 15 years since my wife was first diagnosed and it has meant we have properly lived pretty much every day of it.

All the best.

 

[Zeberdi]

@US Seagull Have sent you a PM x

 

[Brovion]

Thanks for the update. Several times I was going to dig this thread out myself and ask how it was going, but thought that you might want to keep it private.

Really pleased that despite the horrors, fears and the sheer grind of the treatment that you can see at least a bit light at the end of the tunnel. All the very best to you and your family.

 

[Shropshire Seagull]

Thanks for sharing ...
Brutal, but hopefully worth it.
Fingers crossed for Mrs Seagull to be declared cured in 2029.

 

[One Teddy Maybank]

Good luck.

 

[AmexRuislip]

Again, best wishes.

 

[Tom Bombadil]

Sending you all our love

 

[papachris]

Thanks for the update and wishing good health going forwards for Mrs Seagull. As you have described the treatment can be really tough to go through.
My partner had breast cancer in 2014 and was treated at the Worthing breast care centre. Can't praise them highly enough! Ten years later we are still enjoying our lives.
You have done a really good thing sharing what you have both been through on this forum, I hope it helps someone else to understand what to expect should they face similar life challenges in the future.
Sincerely all the best for you both going forwards.

 

[Motogull]

We all hope for further good news in due course. Hopefully the darkest days are behind you both now.