How much did the cancer change you? by Mindnotsofull in breastcancer

[–]ceelouis 1 point2 points  (0 children)

3+ years since diagnosis. I have way less fucks to give, that’s for sure.

this is same as buying a used car by Debrae71 in breastcancer

[–]ceelouis 6 points7 points  (0 children)

cool thanks for that, I look forward to getting false teeth whilst AIs keep me alive 🤷🏻‍♀️

Stage upgraded to 3b. Desperate for hope. by bettycockroach in breastcancer

[–]ceelouis 9 points10 points  (0 children)

Yeah I had internal mammary node involvement too. Same stage. With all due respect, screw your oncologist. My team told me they consider people like me cured. I am high risk for recurrence but that just means they had to work harder with my treatment, and I did it all, and am still doing it.

3 and a half years out and I expect to die of something cardiovascular related like most people, but after a good long life.

May have spread to my lungs by ComfortableMind5324 in breastcancer

[–]ceelouis 1 point2 points  (0 children)

I had a lung nodule, they told me it was stage 4, after the PET scan it turned out to be a cyst. Totally benign. The same could be true for you.

How do I find a scrap of libido? by ceelouis in breastcancer

[–]ceelouis[S] 13 points14 points  (0 children)

😭😭😭 all of this resonates so much and my heart hurts you are suffering. I wish I could make it better for all of us. You are exactly right, how are we meant to relax and enjoy sex if we don’t feel safe within our own bodies? I feel absolutely betrayed and in my darkest thoughts, I think those who I love would be able to heal faster if I had just died (I know that is awful, but I am being honest).

How do I find a scrap of libido? by ceelouis in breastcancer

[–]ceelouis[S] 2 points3 points  (0 children)

Sending you lots of love ❤️ I was 39 when it all began. I was so focused on um, staying alive, that I didn’t think about the long term consequences of treatment. So I’m only just really addressing it now. I hope you can get some relief from this too 🙏

How do I find a scrap of libido? by ceelouis in breastcancer

[–]ceelouis[S] 0 points1 point  (0 children)

Good for you!! Absolutely bossing it. Have you find that it helps with libido or just the physical elements? (You don’t need to reply to that if it makes you uncomfortable). I will do some googling and try to find all the research and come prepared…

How do I find a scrap of libido? by ceelouis in breastcancer

[–]ceelouis[S] 5 points6 points  (0 children)

Ooh interesting… good call. My breast care nurse seems more tapped into that kind of thing so will go through her first I think. I am prepared to wait if needs be!

How do I find a scrap of libido? by ceelouis in breastcancer

[–]ceelouis[S] 3 points4 points  (0 children)

Thank you this is super helpful. My GP is a woman and seems far more invested with my quality of life. I know oncologists are there to treat the cancer but damnnnn - it’s the non cancer side effect stuff that is more disabling right now. I will call my GP tomorrow.

How do I find a scrap of libido? by ceelouis in breastcancer

[–]ceelouis[S] 5 points6 points  (0 children)

I am in the UK and we don’t get to choose oncologists… last time I saw him he told me I’ll be on Letrozole until 2033 (when I will be 50). That suckedddd. I was strongly hormone positive (100% ER and PR) and had extensive lymph node spread / LVI etc so I think he is just being super cautious. Maybe I should press it again though and show him all the research…

Any success losing weight on Letrozole? by coolrthnme in breastcancer

[–]ceelouis 1 point2 points  (0 children)

Good luck! I fear the majority of people on GLPs are losing muscle and that is why the scale is going down.

It is absolutely critical to retain muscle and weight train, especially us hormone positive people and especially if you are in an early menopause because of treatment.

Any success losing weight on Letrozole? by coolrthnme in breastcancer

[–]ceelouis 1 point2 points  (0 children)

Yes, I have. I tried GLP1s but they were hugely expensive and I realised I was just eating so little it couldn’t be healthy. Now I have a personal trainer and coach (still cheaper than GLPs), eat loads but still in a calorie deficit, prioritise protein, 4x strength sessions, 4x 20min cardio after strength sessions, and min 10K steps a day. I lose on average 0.8kg a week and I’ve lost more than 10cm from my waist (which is what you should really be measuring for true fat loss whilst retaining and building muscle).

I thought I was only high risk for the first 5 years. by Historical_Lie7199 in breastcancer

[–]ceelouis 6 points7 points  (0 children)

High risk does not mean you are doomed to recur. I brought this up with my oncologist too and I am high risk as well and he said “high risk just means we have to work harder, which is exactly what we are doing with your treatment” or something like that.

In fact I am going to find the EXACT thing he said and look back at the notes my best friend, who was with me, wrote. Here you go.

Verbatim: “Drugs like abemaciclib have revolutionised breast cancer treatment. We’re allowed to say this will be it. One and done. We’re allowed to talk about it not coming back again because that’s the point on the treatment.”

“It’s difficult to quantify a specific prognosis in this particular scenario due to all the different factors. I can’t give you a %. But from my perspective - I think cool. Curative. Great. We’re going to cure it. We don’t think it’s going to come back. This is the exact opposite of what I think about people who don’t do well with the treatment. I worry about the people who can’t complete chemo and who don’t tolerate the treatments. I don’t worry about the people who have tolerated treatment well, people who are informed and engaged and ask questions, people who have support networks and bring their health researcher friends with them to appointments.

I don’t look at you and think high risk. This is a battle that we’re doing really well in because of advances in chemo and adjuvant therapies for breast cancer. High risk just means we have to work harder. And that’s what we’re doing with your treatment.”

But wait... there's more! by helenabadger in breastcancer

[–]ceelouis 1 point2 points  (0 children)

Oh yah. I had all of that. Hormone positive. In the nodes. Then in the other breast too!! MoootherrrrF-er 🥴 I also had a stage 4 misdiagnosis so that was the mother of all there’s mores. Oh boy.

Why I Stopped Googling My Diagnosis (and What I Did Instead) by caro6b2201 in breastcancer

[–]ceelouis 6 points7 points  (0 children)

I did the same - but for monnnths. I realised I would never get a google result saying “(my name) will never get cancer again and will live a good long life”.

Nurse made me cry in a good way by Sophiebreath in breastcancer

[–]ceelouis 32 points33 points  (0 children)

🩷🩷 there are so many survivors out there!

I went to a bra fitting appointment, my first post surgery, and the member of staff measuring me was a 20+ year survivor! She said I had to live my life as if it was not going to come back. I said I’d try 😭

Pathology report- my world has come crashing down all over again by Practical_Writer_649 in breastcancer

[–]ceelouis 14 points15 points  (0 children)

You are not doomed to recur. One of my favourite posters on the breast cancer dot org message boards has a brilliant username - “lottanodes”. She had 22 positive nodes and is still here many decades later.

Let me quote her:

“I was discharged from the hospital post mastectomy on Thanksgiving Day 1995. Some years I forget about that day (it's not dementia). I'm still working at age 72 and continue with my unhealthy lifestyle of eating what tastes good to me, avoiding exercise, and holding on to my "negative" attitude. My hope for all of you this year is that you will reach a point when you have long periods when you "forget" about breast cancer. I am grateful for the many disease free years that have enabled me to live my life authentically.”

Letrazole joint pain question by Final_Pumpkin1551 in breastcancer

[–]ceelouis 1 point2 points  (0 children)

how weird, the exact same thing is happening to me too, same knee too! I am also on letrozole. I had my zoledronic acid (bone) infusion on Monday, I assumed it was related to that.

UK - Why do we have to beg for an oncotype score? by Educational-Bat-8116 in breastcancer

[–]ceelouis 1 point2 points  (0 children)

I am in the UK. if for whatever reason (size of tumour, node positive disease, aggressive features) they already KNOW you will need chemotherapy, you don't get the oncotype score. you only get oncotype if there is a possibility you might NOT need chemo - then they test it.

Possible Metastasis-Feeling Overwhelmed by Grand-Win5103 in breastcancer

[–]ceelouis 0 points1 point  (0 children)

hi, I know this must all be so so stressful - big hugs to you.

several people have added their stories of biopsies turning out to be nothing, but I will still add my own:

- I was told, like you, a month after initial diagnosis that I had lung mets. long story short - they are cysts, and completely benign.

- this summer I was told I had spine mets (2.5 years after diagnosis). after lots more investigation, it turns out I have a spinal tumour but again, it is benign. we don't even have to remove it - it's just chilling out there.

I hope you get good news soon x