Terrified

[Seagulls]

Could I ask why you had both breasts done? I am only having one. Maybe it’s better to have both as then they will match.

Cheers

Seagulls

[Seagulls]

Very useful information. I am glad they get bigger and smaller depending on how much you eat. I am fairly slim now but you never know the lure of peppermint magnums my favourite choc ice on a stick may change that. 

It’s not really a sea gull diet but needs must, along with chips, cod and the occasional cat and dog food. We are a protected species but I am not always looked upon with favour as I quickly swoop down on my prey.

Seagulls

[Barbamama]

Hi @Seagulls 

yes, they are not like real breasts at all. Just little sacks of fat but it is my own fat. I did not have much to start with (fatty tissue) but at least it is part of my body. If I gain weight, they gain weight, if I loose, they loose. When skin goes saggy with age , they do as well. Yes, you absolutely feel them, it is the same as feeling is another fatty tissue on your things or sides of your tummy, soft and warm as well. The are not numb. 

as for my knowledge of trials, Car t-cell therapy, has been around since 2017-2018, I think. I was told they were very successful in brain cancer trials, later on they had trials on secondary breast. But it still not approved for BC patients. I was told, they start new trials now in Switzerland. 

I am not a doctor/medical. Someone who works in oncology field mentioned that to me.

[Kay0987]

A diep is fat solely. But then most breasts are. My weren't and that was the problem. But the US has the same DIEP procedure as the UK so no special trial here. A few other reconstruction procedures coming out but if you qualify for the DIEP that's the one they want to do. It's the easiest with the best results.

[Kay0987]

I need to get to that point. I mean we're all going to die. I think of life as party. We all go and some of us may stay a long time and have a pretty crappy time. Others of us have to leave early but we thoroughly enjoyed it while there. I don't know when I'll leave but I know I'll have peace if I'm one of the ones who had a blast.

Even contemplating refusing future breast cancer scans as long as I don't have symptoms. I've read they aren't useful since treatment is going to work no matter what or not. So what's the use? They just horrifically stress me out. I'll get the scans that if they catch something early it matters but the ones where it doesn't? Just leave me in blissful ignorance. 

As far as your balance goes, yes it is far more likely you have an inner ear issue. You're in your sixties, right? I mean from 40 on crap happens. And it's not always cancer. That's the part I need to work on myself. To not think "cancer" all the time.

[Seagulls]

I am afraid they can worry us all with their knowledge and I can worry myself silly too and interpret any symptoms as cancer related. The treatments themselves can be pretty harsh as they are designed to kill human cells that have malfunctioned. Our bodies aren’t designed to attack human cells even if they lose the ability to stop dividing (most human cells die, a process named apoptosis). If they keep on replicating that’s when tumours happen. 

One book  I read years ago said that’s the reason the treatments are so unpleasant.

For the past couple of weeks I have felt dizzy when walking unless I use walking poles and I have convinced myself this could be cancer in my brain. It is far more likely I have a problem affecting my ears. I met someone today about my age who asked if she could sit at my table in a cafe, and to start with I said no but she sat down anyway. I said something rude to her as a friend’s child was supposed to be sitting there, but it turned out she’d also been feeling dizzy and just had to sit down. 

I think it’s just age but if anything odd happens, maybe a side effect of treatment, the first thought is it’s something due to the cancer spreading. So you have more tests to establish whether that is true or not. And then you are under the constant care of a Doctor. 

I am now going out and doing as much as I can regardless of any symptoms I am getting. Yesterday. I went to two jazz concerts in Rye Church in East Sussex, one in the afternoon, went home for two hours to eat and look after the dog, then back in the evening for another concerts. First one was Muds Morgenfield, son of Muddy Waters, the evening one was Imelda May a great Irish singer. The acoustics in the Church are brilliant. I like the phrase, 

“I’ve got cancer but it hasn’t got me”

From time to time I worry, but you worry, you die, you don’t worry, you die. So it’s how you live that matters most.

Seagulls

[Seagulls]

That’s interesting about the diep reconstruction being like fatty lumps. Do you feel any sensation in them? Presumably not. I was also interested in the trials going on. Is this in the USA and what are they about?

Cheers Seagulls

You seem very clued up on new developments.

[Barbamama]

Hope you have made decision what is right for you. xxx

[Kay0987]

Well I had some very recent complications develop so we're on pause right now anyway. I was supposed to have my second chemo on Thursday so on Wednesday I started my fasting and steroids. I ate something with my steroids but nothing else that day. Anyway about 5 and a half hours after I took my steroids I very suddenly went from fine to having stroke like symptoms. Slurred speech and everything. My kids were the only one at home with me at the time and it scared the crap out of them. They ended up calling 911 and off to the hospital I went for a series of tests and scans. My first ones really. They think they caught my cancer really early so I've only had surgery and one chemo session. No scans. So not only was I nervous over my concerning and odd symptoms but also petrified at them looking at my brain, etc. They did a CT scan that night and low and behold they saw a lesion. So you know what my husband and I jumped to immediately. They didn't. They were quite clear that the lesion didn't look like a mass and in fact there were not even mass effects and as a result they were wondering if it was just a mistake. But an MRI in the morning would confirm so we had to wait until then. Long story short, the lesion ended up being a garden variety very tiny white matter lesion on my frontal lobe which looks like it had been there a while, are very common, and had nothing to do with my symptoms, and the rest of the tests came out fine. So no stroke, no cancer, no stroke forthcoming and I'm cleared to go. The symptoms they believe were from a reaction to steroids so my oncologist is cutting the dosage in half for me, I of course will stop fasting, and my chemo is rescheduled for Monday. But now I'm dealing with emotional fallout at home. My partner doesn't want me in chemo at all anymore and especially not this Monday. We are set for a very much needed vacation the Saturday after and that will only leave me five days to recover. Plus my counts will plummet while there. Not ideal. So I am wondering if it will effect my future prognosis to just wait till I get back to resume allowing everyone in my family emotional recovery and rest plus allowing my body continued recovery from the damage the steroids did (no longer active symptoms but I can tell my muscle strength is a little less). I'll end up finishing later as a result of course which sucks but I should still be okay by the holidays and have had enough recovery by my DIEP. Anyway does anyone know anything about delaying chemo that is solely for "mop up" and whether that is okay? Talking to a colon cancer oncologist yesterday and she said for her, it's not an issue at all, but no idea what breast oncologists say. My breast oncologist is out on leave and won't be back until Monday which leaves me in limbo about what to expect on Monday.

[Barbamama]

Chemo was not too bad for me either. 2 days afterwards crap and next 2.5 weeks fine.

hope you will not loose all hair. Fingers crossed xx

[Barbamama]

Hope DIEP will go well. Mine was very long as one breast would not start blood flow or something like that. and then they check you every hour for next 12 hours or so that there is a blood circulation etc.

They are not like breasts at all though. Just little fatty lumps 🙂 BUT i am ok with that. 

Mine are targeted and endocrine therapies. Not exactly chemo but long term or even all my life.

There is new therapy Car-T cells. But it is not approved yet for BS. they have just started trials for BC. 

[Kay0987]

Oh and my first chemo went really well. I fasted and whether that helped with side effects I don't know but I was never nauseous, appetite was great, energy stayed mostly normal (2 bad days although I could still get normal activities done, just more slowly), and minor skin irritations. Had some bone paid from the ziextenzo and it lasted way too long (8 days) but it was never excruciating. Just irritating. I'll ask my oncologist tomorrow how to better manage that. Hair loss is my biggest complaint at the moment but I am hoping it stops before I lose it all. I can lose a ton without people noticing because I have thick hair. But I'm cutting it close right now and want it to stop. My chemo appointment tomorrow is actually one day early which is fine. I just want to get this crap done and move on. Looking forward to the holidays where I can recover and get used to whatever endocrine therapy does to me before my surgery. 

[Kay0987]

I have done the same thing. Double mastectomy although in my case I didn't get a lot of arguments about it. We have tons of cancer in my family. No gene detected yet (definitely not the high impact genes like the BRCA's since I've been tested for those already) but I am waiting for results from one more test to know for sure. So although technically I could have gone for a lumpectomy I don't know as anybody really thought a good idea to keep my natural ones. I didn't even detect it the first time around. Caught by annual screening. Too dense with really large breasts despite having a 32 ml lump. Shoot couldn't even find it after they confirmed the cancer nor could my oncologist. So in that case, I think everyone was quite supportive of them being gone. Will have a DIEP early next year. Looking forward to small, tidy, easily monitored fat filled breasts. Plus no more mammograms is a nice bonus. No radiation since lymph nodes were clear with no LVI. My oncologist doesn't seem to be keen on ovary removal right now nor hysterectomy but I have a feeling that will change. I'm the first breast cancer in recent generations that we know of but both my mom and her sister had ovarian cancer and my aunt on my Dad's side as well. Already had my fallopean tubes removed preemtively a couple of years ago before my diagnosis. Makes sense to do the ovaries, too, although no rush since I'll be put into chemical menopause with an AI. I doubt they'll ever want me to make estrogen again. It's obviously not mine nor any other female in my family's friend.  

You did everything right. It just sucks it came back but we're all in the same boat there as far as possibilities for recurrences. I am doing everything right but the future is something I can't control. None of us can. Hell not even people without cancer can. No one is guaranteed anything. But it's a good sign that it took over a decade for a recurrence. It can't be all that fast growing I would think. Are you on an immune therapy treatment? I've heard of the drugs you're taking but not familiar with how they work.

[Barbamama]

Sorry to hear that, @Kay0987 

I did it all (maximum I could back when I was 37.5 y.o., I think or 38...)

Double mastectomy, did not have to, but was my choice. Chemo (I shaved my hair after 1st one and wore a scarf), 25 radiation. Had reconstruction couple of years later, had to gain weight to get some belly weight, I am quite slim. They used belly to re construct breasts, two little sacks but breast prosthesis annoyed me greatly 🙂 Now at least I have some sort of tiny cleavage. uterus is gone as well, partial hysterectomy because of heavy menstruation. Joys of being a woman with with big C 😞

No ascites at the moment but they can come back.

How are you coping with chemo? Is it your fist time?

xx

[Kay0987]

Yeah I know what I'm dealing with. It was grade 3 IDC of no particular type. Oncotype was 23 so chemo for me since I'm under 50. It would have been no chemo if I had been over 50. Had my first one three weeks ago and my second one is coming tomorrow. I cold capped but hair is still falling out in droves. Hoping it stops and I retain most of it but it is what it is. For the most part I'm settled in and going forward and trying not to think too far out in the future because really, what's the point. I can't control what happens and can only do the best I can now.

Hopefully you won't have any side effects from the endocrine treatment. You're 50 now so got to be close to natural menopause. Hopefully that means no estrogen won't be as much a shock to your system. And yeah when your peritoneum and omentum is affected, you can get lots of ascites. So that explains it there. Hope the ascites improves quickly since that's probably what is most uncomfortable. Anyway the meds you are on can stop everything in it's tracks and has for lots of people. No reason to think you'll be different. But of course you can't figure out how you feel right now either way. It's too soon and your world has been rocked. But you're doing everything you can and that's all any of us can do. At least now you know what you're dealing with and have started treatment. I hope that gives you some comfort.

[Barbamama]

Hi @Kay0987

Sorry I disappeared. Have you had your results already? Fingers crossed for you.

Last two week were 2 weeks from hell but I am here now in front of my PC and about to start to work.

I came from holidays with bloated and gassy tummy (so I though) and I had MRT, CT, laparoscopy, infection (on antibiotics now), DVT scan , got biopsy results and I started treatment this Monday. All done in 2 weeks.

My 11.5 years ago small lobular cancer gave me metastasis on one of the ovaries (gone now), spots in peritoneum and omentum.

On Monday, I had injection to put me in menopause, and I just started Kisqali (ribociclib) and Letrozol. On a 2nd day now with meds. 

Quite a rollecoaster. No side effects so far with meds, just a bit sore and gassy from laparascopy.

Do not know how I feel now. I think I am still digesting. 😞 Will make another post now as I have a few questions regarding meds).

Let me know how are you getting on. lots of love xxx

[Kay0987]

I know. I'm not far into my breast cancer journey myself but out of everything I've gone through thus far the three weeks waiting for the diagnosis was by far the worst. I can only describe it as torture and I'm so sorry you're there again. I hope results come quickly and that your treatment starts almost immediately after that if it's what you want.

[Barbamama]

Thank you. Yes, I am told I have fluid ascites up to my lungs and I feel like I am pregnant.

Having my diagnostic surgery on Tuesday and they promised to pump out the fluid. 1-2 week later after laparoscopy doctors will start treatment and I hope I will feel more optimistic. Right now wait, physical discomfort,  and not knowing is just killing me. xx

[Kay0987]

I am not a doctor first and foremost but I do want to say that what you're describing sounds like an ascites related symptoms and not necessarily cancerous growth (my mom had ascites with her cancer so it's why I'm familiar with it). Granted ascites can come from cancer and that is probably what is happening in your case but just because your stomach looks larger doesn't mean the cancer is growing by leaps and bounds. It means your ascites is increasing which is what happens with it. It's fluid after all. Anyway they can help manage the symptoms of ascites so that you feel better and your appetite comes back. Draining is an immediate relief for instance. Not to say there aren't complications with that but your doctors will know how best to manage. I hope that diagnosis moves quickly so you can get to the treatment part and feel more comfortable. 

[Barbamama]

thank you. I am the one who ask all questions and need to know everything no matter how awful and brutal truth is. Only in this case, they cannot say anything, just keep saying it is not looking good. I have the same doctors as first time around, so they know me for almost 12 years. I am told that I might have immunotherapy, maybe hot chemo, just chemo and most likely debulking surgery. Waiting for biopsy is killing and me and all the bad thoughts crawling into my head. love xxx

[Barbamama]

thank you. That is what doctors say they want to see if that recurrence or new growth. I try to keep myself busy, some day are better some days are worse. Kids only know, mum needs an operation they found something and it does not look good. As they are teens , they live in their own world and carry on happily with their life (thank god). I know I am not alone and that is why I came back to this board as this forum helped me immensely first time around. trying to think positive and keep telling myself I will do my best to get rid off this nastiness. xxx

[Barbamama]

Hi Louise, thank you so much. What scares me the most is that they say its in pelvis everywhere but the also say that looks like organs are ok. I do not have uterus, only cervix and ovaries. There is a growth on one of the ovaries. And my tummy is so round and full all the time, it is so scary like it is growing every minute. You are right, it is emotions... I think I will feel better once I start treatment. thank you xxxx

[Loulou1007]

Hi

i am 52 and live in the UK. I have secondary BC in my spine (3 spots) I also have no pain and live a more or less normal life, it’s just my emotions that sometimes take over. I was diagnosed June 21. There are many treatments out there for ER BC, ladies on here have been told by there oncologist to view this as a chronic illness. I have a friend who has SBC for 5 years in her hip then it moved to her liver but treatment has got rid of the liver tumour👍. It will become easier in time. A nurse said to me if one treatment doesn’t work there is a cupboard of other treatments and occasionally it can take 2nd or 3rd treatment before it kills the buggers.

Be strong and take care.

Louise x

[Kay0987]

I wish I could think of something to say that would take all this away. But I just want you to know you're not alone, there are others reading what you wrote who don't know what to say either except that we hope it gets better soon. Beyond that though is first thought for me is I'd wait to see what the biopsy says. Is it a recurrence or a new cancer. That will determine treatment and prognosis. And secondly there has been a lot of stuff to hit since your first diagnosis 11.5 years ago. People live with mets right now some for decades. No one knows what's possible in each individual's case and right now the specifics of your case aren't known either. Hopefully those answers will come soon and then your doctors can advise you on your best foot forward. But you are the one at the wheel. You get decide how to handle this and what to do in response to it. Everything in me wishes you the wisdom and knowledge to move forward in the best light possible. Much love sent your way.....

[Shi]

Barbamama ❤️ You are in charge 💪 you can ask your team directly any questions you want to know ❤️ It’s your choice ❤️ To know what treatment plan is and how detailed you want it to be, you are in charge ❤️ It’s good to know with you being in Europe that you have everything available to you ❤️ Sending much ❤️💕💕✨✨Shi xx

[Barbamama]

Hi there,

Here we go again 11.5 years later. Back first time I posted here when I had small hormone receptive tumour in one of my breasts. Double mastectomy, chemo, radiation and 10 years of tamoxifen. I actually forgot about breast cancer. (I did not need double mastectomy, I just chose to chop my breast off).

This summer everything has started with a pain in my hip when I sleep (paid zero attention) and stomach problems, which I presumed indigestion/gastritis etc. After two week of holidays and eating out in restaurants I looked like I am 3-4 months pregnanat (I am petite and skinny). Went for an ultrasound and immediately ended up with MRT. Fluid (aceties) in my tummy, lots of cancerous growth as they say, ovaries have lump etc, 1 metastasis in my peritoneum and 3 in my bones. Having diagnostic surgery next week to pump out the fluid, take biopsies of everything what possible. I am 50 in 12 days. First diagnose I was 37.

I feel physically fine, cannot eat, no appetite, pee every hour a bit. Keeping myself busy with work and family, I have two teens. 

Doctors are all very calm and say prognosis is not good. Is it time to make arrangements? Do I have like 3 months to live? I am not in uk but in Europe. We have excellent healthcare here and everything is available for me. 

thank you for listening.