Tired of being dismissed

Feeling I need to vent my frustrations.

From the moment I found a lump, to getting anyone to hear me, through the journey to now where I’m on OS & AI and the side effects drs keep dismissing EVERYTHING I say, my concerns chalked up to “there, there” or “are you stressed? Feeling depressed” and back to the 1800’s with women histerics and it’s just her emotions and psychological issue of womanhood!

Sigh, ever feel like that?
Most recently I started the nat-letrozole to the OS and my blood pressure skyrocketed to 172/100. My BP prior and all the past year has remained a steady 120/76. I take my BP 12 hours after the nat-letrozole and poof!

Told my dr and he said, “there is no evidence that shows the AI or OS cause high blood pressure or mortality to heart attack or stroke and you are probably just stressed”

I did my research and oh yeah, studies prove multiple studies prove mortality. Part to the estrogen removed which contribute but studies say and medical articles say when on these drugs we must be carefully monitored and even drug changes. Yet my dr claims, “there, there, your just stressed” attitude - denying the research I find.

How is it we are to be cared for when no one listens?

I mean think about it, same day if starting it bp goes berserk. I mean like a hammer doesn’t itself cause pain to a human. It’s just a hammer. But if you are using that hammer to hammer in a nail, you miss the nail and hit your thumb… It was most likely the hammer that hurt your thumb, but oh no, there is no scientific research showing evidence hammers cause thumb pain! (Sarcasm)

Oh and another study , recent study says even today, depending on her age, there is 47% - 60% likely a woman will be dismissed of her complaints vs 10% men. A woman is more likely to be prescribed antidepressants when complaining of pains where drs belief she is stressed, emotional, or needs psychological care not pain killers or investigating to her pain. That study showed also it takes women up to 8 years before a dr will examine her and discover she has endometriosis! 8 years she suffers!

Yet here in the cancer battle of our lives, with drugs known to exchange one organ to save another, she is ignored.

Is it just me? I’m so frustrated and feel like giving up because … Well, why bother- no one listening anyway.

You know, I think I’m dismissed so much I dismiss myself. When I found the lump, I dismissed it as nothing, I’m just imagining things, it’s probably just a swollen gland and will go down when I’m not so stressed. But… I wasn’t stressed at all, I dismissed me like everyone else does. How sad is that?

Anyway, just wondered if anyone else feels it too.

Thanks for listening

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Vent away!!
I’m sure most of us have come up against this attitude on more than one occasion!

I too do my research :muscle: frankly if Letrozol is effecting you bp to that extent, I’d question if it’s the right med for you too!

I’m not at the point of starting hormone therapy yet but I’ve been reading up on this A LOT. I worry about the many side effects as we all do. It sounds to me a bloody case for pressing your own point or getting a second opinion. You aren’t imagining it. It’s a fact. It’s not a good bp. reading is it :woman_shrugging:

I’ve had many an intense exchange with the white coat boffins over the years and it always come down to ‘advocating for yourself’. You just have to.

My late great formidable grandmother would say “they will only do to you, what YOU allow them to get away with” Words I live by

Don’t be patronised. Your concerns are valid. You feel angry for good reason. It’s your body/ your health.
I too worry that the cure might be worse than the disease. I’m still weighing up Tamoxifen v AI (particularly the one that you are taking). My family history along with my own gynaecology history makes we worry about the side effects. I don’t relish 5/10yrs of purgatory with gynae issues I thought I’d left behind years ago :pleading_face:… it’s all so perfunctory isn’t it?
“You’ve got this type of tumour- you take this … away you go!” … what about quality of life??

You rant away! …

Here here :clap::clap:

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Thank you.

Yes I read about tomoxafen exchanging the overies by causing ovarian cancer and then having them removed which effects your rest of life quality with needing to take estrogen and then the ovarian suppressors and aromatase inhibitors with bone loss, hot flashes, increase BP, hypertension, and kidney issues and it really does seem like exchanging one organ to save another. Both have zero stop cancer guarantee and it doesn’t kill cancer just stops it’s progressing to a point.

But also read that a new approach for tomoxafen is low dose, 5mg day or 10mg every 2 days which lowered the risk to the overies and still maintained the effect in cancer prevention. I asked my dr for that instead of these drugs and again, dismissed completely because he is 100% focussed on the OS & AI drugs.

The right to try should be forefront.

I’ve also read a lot on no drug course of action (poorly called natural methods which still isn’t natural but less toxic) and it seems that too has the same survival rates but strangely kills the cancer cells + stem cells but way more out of pocket cost & so I’ve opted so far to do both at the same time, the drugs and the non-drug natural methods one to kill and one to stop from starting while I’m killing cancer is my approach.

But these drugs are harsh, and I fully understand why 50% women stop them within 2 years, strangely right around the time 50% of the drugs fail as well.

It really is some hard decisions, a lot of researching on our own, and overwhelming and then on-top that if you aren’t 100% obedient and question things it seems to be harder.

I agree with your relative, wise woman, they only do what you allow is very true, but we need to be informed to be able to choose and not blind obedience, which it seems is what is expected.

Thank you for your encouragement, I really needed that boost, I know you have a great deal of strength in you as I read your reply, and wise people around you. I wish you well on your journey.

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Yes, much the same info that I gleaned on one of my many ‘rabbit hole’ research missions.

I don’t really get why consultants/doctors etc are so miffed at being questioned! -

Some if us feel happier knowing as much as possible- some cope better just following advice and opting out of doing their own due diligence.
I don’t (& neither do you)- knowledge is power, as far as I am concerned.
That make an informed decision requires information doesn’t it?…
I’m not advocating ignoring their advice or refusing treatment but I do think adjuvant therapy needs far input from those of us who have to live with the side effects.

I accept that it will be in my interest to have hormone therapy but there is more than one to choose from…

It should be agreed upon after consultation with the patient- not forced upon and case closed.

And the antidepressant scenario makes my blood boil - been there. It wasnt depression I was feeling either, it was annoyance at being patronised by an ignorant,bored mysogynist- clearly out of his depth and ill informed, or else just plain ignorant. Either way, that particular white coated prick wasted both of our time… & i told him so!!

I doubt he will forget me in a hurry… :smiling_imp:

Consultant = consultation : the clue’s in the title, isn’t it?

Good luck to you.
We all find our own path… I hope you find one that keeps you cancer free AND healthy long term too :crossed_fingers::crossed_fingers:

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Hi @astseesit
I’m so sorry you are experiencing such a closed minded medical individual.
On this forum there’s written proof that letrozole can indeed cause high blood pressure
I have posted the link below :point_down:

Would it be possible to speak to someone else perhaps your bcn or one of the nurses on this forum.
I have been taking letrozole for 2 years in August and experienced lots of side effects. I have had to fight to get heard ( took me a year to get an appointment with a gynaecologist) when one of the symptoms was vaginal atrophy. My gp tried to palm me off with a blood test form to check for cervical cancer. This was immediately following my diagnosis! This was not the issue it was ceasing HRT and obviously lack of oestrogen as my cancer was oestrogen receptive.
What I’m trying to say is continue to stick to your guns. You only had an increase in bp after starting your letrozole journey
There are other AIs available and you oncologist should be able to advise you there.
Ok so lots of medications come with side effects but if you can find one with suits you better whilst protecting you from the risk of a recurrence it will be worth it

Best wishes
Lynn x

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Thank you
Oh yes agreed I have a lot of side effects, from the injection and triple it now with these pills.
The HP is alarming as my family has history of heart attacks - not breast cancer though, I’m the only one. So that’s the I suppose the final straw in the list of pains, from these drugs.
Now I’m told I should stay on the drugs but now take BP medication, possible diuretics too. Instead of just changing the drug. Sigh…

Thank you for listening and the link, I’ll use that next time I see my oncologist.

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That’s less than helpful and frankly smacks of lazy doctoring! I would absolutely refuse to take more pills when it is blatantly obvious that it’s the Letrozol that is the culprit… stick to your guns and contact your BCN. Tell them you need to switch- immediately! Don’t ask-Tell :muscle:

Good luck to you xx

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I definitely get the worry given your family with heart attacks. You are right to flag up any medication that could have a detrimental effect on your health.
I haven’t asked this question myself, but your oncologist could perhaps see whether the benefit of taking AIs outweighs the health related issues.

That way you could get a better idea

Lynn

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I’d be interested to hear more about the no drug course of action that you have researched? I have also gone down this rabbit hole a little bit.

I am, however, dismayed to read that your doctor “refused” to switch your medications when you are struggling like this.

It is in fact your right to try, and not his right to insist and tell you that you have to take the ones he thinks are best. Non-compliance is a big issue with these drugs and Tamoxifen is still effective at preventing recurrences. It is not like you’re requesting an off-label medication. What if you told him you couldn’t take the AI any longer, would he leave you empty handed just to prove a point?

These are the conversations I’m dreading having myself, to be honest.

But, one thing I’ve learned about doctors over the years is that it’s a waste of time ‘preaching to the converted’. I would put your efforts into finding a new one who will agree to what you want (if private), or if it’s the NHS, requesting a different consultant/GP to handle your care.

Hello cathut
Absolutely I am open to sharing & comparing notes.
What would you be interested in hearing/disgusting? Message me, or here is great, I’m open.

I’ve been taking what I feel is the most proven and the best parts of research & books & some early pioneers into diets & health. I’ve been combining it into one “protocol” that I’ve been implementing daily, tweeking as I go and learn,
It’s a combination of meal planning, movements, body care attention, suppliments & herbs, and detox from poisons & distractions like from electronic to PFAS etc.

As well I may add off label drugs.
I’m also looking at LDN =Low dose neltrexone.

As well a study I really want in on is the “cancer bioshield” ImmunityBio’s platform, spearheaded by Dr. Patrick Soon‑Shiong.

Let me know :+1:

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It’s been five years since my diagnosis but I keep an eye on the chat incase I feel able to help.
You are heard and understood!
I had to do so much research and learn to fight my own corner as have many other BC patients that I have known. Thé services in general seem to play down side effects, palm them off as symptoms of stress or menopause and be dismissive or ignorant of proven research. They have no understanding of the effect on quality of life. I had hideous side effects to most drugs including complete insomnia, suicidal ideation and bilateral Achilles tendinitis alongside menopause symptoms on speed! Luckily I recognised suicidal thought as drug related in both myself and in another patient. It took 18mths of not being able to walk before I sorted out my own tendonitis. I have an inappropriate tachycardia and now need a hip replacement all related to BC treatment!
Having tried to persevere I eventually decided to stop the hormone suppression as I felt the small potential gain did not outweigh the misery of the side effects. It’s a tough choice but looking at research data can help. There is an excellent documentary by Dr Hannah Fry on understanding cancer statistics and side effect profiles.
Let’s hope à cancer professional somewhere reads these posts and takes our pleas about side effect management seriously as it is currently all but non existent!

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Thank you so much for sharing your experience with us. It so important to hear your voices ladies.

I’m primed for a battle with this when I have my own follow up in August, but it’s our body- our choice!

I really struggled when my estrogen dropped in perimenopause. Going back to that - open ended- is a frightening prospect. Add to that a whole litany of woes from AI and a fail to see the long term gain here.

I mean, you’re breast cancer is slowed down, but your bones are snapping, you can’t move, your heart’s knackered and you feel like ending it all anyway…
Sorry, I’m not being flippant for the sake of it, but it really is all about quality of life. And I know they say it’s only 5yrs - maybe 10. But if for all of those years you feel horrid, that’s a bloody long time out of your life that’s wasted on a “maybe it’ll stop a recurrence”

My surgeon said that hormone treatment was better than another surgery…. Some of you ladies, I think, would beg to differ. Side effects are not somthing to skirt around. They have to be weighed against your long term health.
Thank you for sharing

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Totally know how you feel. Lucky even if you get to see a doctor, more of a chance to get an appointment to see the pope!

Funny how we get high blood pressure, high cholesterol etc and all they want to do is give you more medication. I don’t understand all the ads when people come out and say ITS GONE! I RANG A BELL! Obviously they’ve be told. No one had ever told me its gone, or whatever, i live day to day not knowing if I’ve still got it is it coming back am i going yo die!!! Yes had mammograms but that does not told me if it hasn’t moved on else where… Not only are you dismissed you don’t have any after help, you ring a nurse and they just confuse you more. All the chemotherapy radiotherapy medications and no one checks on you, there is NO after care! Nor appointment with a doctor, no the surgery nurses are NOT doctors!

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Hi @astseesit

Would you mind sharing with me as well. I am extremely interested to learn more about your findings. I have my 2 year check with the consultant in August and have been on Letrozole for that time. Finding things difficult I have to say. Managing to navigate the VA but the joint pain esp around the ankle area is definitely a problem. I did speak to my osteopath about that as well as knees as they are definitely swollen. He examined knees and ankles and apart from a small amount of fluid said they are not inflamed. So basically he said it’s caused from AI…
I was never given the predict score from the oncologist

Thank you

Lynn x

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Hey Lynn
I had this same issue on Letrazole. They told me that my Achilles pain was menopausal and not linked to the drug! Wrong!!! Tendonitis is in the side effect profile. Thé doctors just don’t seem to know about the side effect as it doesn’t affect everyone. It took me 18 months to get it sorted.
If you think it might be this, get an ultrasound. Then switch drugs . I used GTN patches on my ankles to reduce inflammation. 5 weeks later it was resolved.
Good luck sorting it as these side effects wear you down and make recovery much harder. All the best.

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Yep, dismissed by the breast clinic and put back in my box only to find out 2&1/2 years later the lump is breast cancer.
They gave me a breast pain leaflet and when I prompted about the lump she said it’s a bony growth.

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Thank you for your reply.
Good to know these things as I haven’t had any useful advice apart from take ibuprofen…
Wishing you well

Lynn x

Hi Lyn
The other thing I forget to say is that I take a cox 2 inhibitor as a painkiller as none of the standard drugs helped. I take 90 mg of Etoricoxib. This is stronger than ibuprofen but doesn’t destroy your gut. It does have some contradictions. Mine was prescribed by a rheumatologist after I read about post chemo rheumatoid symptoms. I am now waiting for a hip replacement which I feel is related to treatment. All the best.

Hello, what is the non drug approach you’re taking?