Don't know who to turn to.

[Black Jaguar]

Hello this is my first post and first time on a forum.  I'm a M2F, had surgery back in 1994 at the age of 21. 
Last year I was diagnosed with an aggressive form of breast cancer, triple negative, it was left undiagnosed for nearly 4 months, though I found the lump at the end of April didn't get seen by a specialist until the end of August, though was in pain and begged to be seen, was told that cancer patients were priority and that it couldn't possibly be cancer, anyway when I was finally scanned and biopsy taken, was told there and then that the tumour was cancerous, the surgeon snapped at me 'well what do you expect hammering your body with estrogen for all these year". 

Well the biopsy confirmed it was not caused by estrogen, though I had to stop taking my medication whilst they did a further checks to have a second opinion on the triple negative tumour and two surgeries.   In all I stopped taking hormones for a little over 3 months in which time my body started to reverse itself, I had greasy skin and hair, boils in my scalp and spots on my face breaking out with black hairs growing within them. 

Any I took matters into my own hand and started back on hormones as I refused chemo as I suffer from M.E and was told taking hormones could cause blood clots and could get septicaemia if I undertook the chemo, they have given me a 70% survival that i'll still be alive in 5 years. I thought quality instead of quantity was more important so want back on my hormones.

I switched from premarin to progynova, after refusing chemo, but had radiotherapy and since then my body is still reversing.  My hair has thinned all over during these last few months and is falling out in masses, my facial hair has grown back, have started back on anti androgens which has sorted the greasy skin and hair, but my hair is still thinning and facial hair just as bad, going to have to start shaving, which is annoying after spending thousands of pounds on electrolysis and laser treatments over the years. 

I feel that my body is betraying me.   

I don't trust my GP as it was her incompetence and ignorance, I consider in the long delay to be seen by the Breast Consultant.... she gave me analgesic cream for the tumour, I blame both her and the breast surgeon who assumed because of my past it could not possibly be cancer.  Apparently I'm the 6th known case to have been diagnosed with Breast cancer. 

I really don't know what to do for the best. I was wondering if taking herbal supplements like red clover might help me.  Am now on a low dose of estrogen and cyproterone acetate and the problem is continuing. I just don't know who to talk to and who to trust anymore.

[Mariah]

Hi Black Jaguar, welcome to Susan's. I don't know what to say to be honest and I'm sorry you have had to go through everything you have ben through. If you your not happy with your doctor's I would recommend seeking others out. I look forward to seeing your around the forums. Good luck and Hugs.
Mariah

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[Tiffers]

I don't have any advice for your situation either, but I feel absolutely awful for what you are going through.  Hopefully someone will reply that has a knowledge of herbal supplements.

[Ms Grace]

Hi, welcome to the forum. I'm really sorry to hear about your situation, it sounds like a nightmare. Having used herbals in the past I have to say that I found close to zero effect from them and have to note that some of them don't come with their own inherent health risks. There is also a possibility they might lessen the effect of any hormones you are taking. Are you self medicating by any chance? If you are I'd strongly recommend finding an endocrinologist who might be able to help you with the right choice of hormone and dosage to deal with some of the side effects you are currently experiencing. All the best.

[Jake25]

I don't know much about cancer, sorry you're going through this though. I have known someone who's hair grew back just as thick as it was before after chemo though.

[Laura_7]

-You could ask around for doctors knowledgable on the subject. I'd look for doctors with a holostic approach, not only chemical.

What now follows is additionally to treatment, this is no health advise, do this at your own risk... you get the drift...

There are people who said meditating on the area helped.
There are different methods, people have their preferences...
you could see the area flushed with light...
you could see little people attacking non benign cells...
you could see non benign cells shrinking...

Baseline is to relax, calm down, maybe with deep breathing, and doing a routine of imagining the desired result, in a deep relaxed state, a few times a day for a few minutes. It could take some time to get a clear picture, but afterwards become a routine. You might try something that gives an uplifting and positive picture.

Tomatoes might be an idea. Meshed, as slices, or slightly cooked as sauce, all with a good oil.
There are people who said it helped them, and there are studies. You might look that up.

Praying helps. Regularly, maybe a few times a day.

You might see this as an opportunity to bring more joy into your life.
Its often that stress is a big factor.

Often its a matter of preferences. Its often possible if thought over to devote more time to a more peaceful and serene lifestyle,

There is an author called Louise Hay. She has written a few books going in that direction, hinting that healing can come from releasing anger etc. and concentrating on things that bring joy. For example what dream would you like to come true ?
I wouldn't agree with all she has written, a few things are outdated imo.
But the general idea is very healing imo.


Concerning hormones, I'd stick to bioidentical estrogen via sublingual, topical, injections or implants.
Adding a small dose of testosterone might also help.
Many studies showing risk factors were done on oral intake (not sublingual).
You might talk this through with a doctor.

With sublingual intake, spreading the dose throughout the day might be a good idea to keep levels more steady.
For example four small doses instead of one or two big ones.


Have a big *hug*

[Dena]

I am sorry this is happening to you but I do have some ideas and questions. I have been off the hormones for 10 years because of my age and have not seen the changes that you are seeing. If I were you, I would go off the hormones for about a week to flush my system and then have a blood draw. The doctors should run test checking the levels of all sex hormones and other hormones in your system that might cause what you describe. While sex hormones are normally produced by the gonads sometimes they are produced by other sources and the scary one is a tumor could be messing up your system. If the levels are above normal background levels you need to demand an answer from your doctors as to the source.
If levels are normal then the only other place I can think to look is the chemo drugs in the not so common side effects.
If I recall correctly, Premarin comes in some pretty low doses for menopause women and instead of your standard dose, you might be safe with a minimal dose. If you aren't getting your medication through an endocrinologist, you might want to make an appointment with one and run some of this by him or her.
In my case I was pretty sure I wasn't producing hormones when I went off them because I had massive hot flashes for several years after quitting. 
I hope this helps you find an answer.

[Black Jaguar]

Thank you all for your replies.

So many things going on in my head at the moment.  New aches and pains in my back and my limbs, at the back of my mind I fear that the cancer has spread and that yes it could be a secondary tumour causing the issue with my body reserving itself. 

Was going to make an appointment to see another Doctor yesterday, but had a kind of panic attack and could ring for an appointment.  I'm quite philosophical about the situation, been through all stages of emotion.... anger, fear, disbelief and now acceptance, you can't change the past what has brought me here and there's no point in worrying if its the end of this life as I believe life continues after death.

Death is going to happen to all of us at some point, I've been lucky I've had 42 years, my sister only had 15 and my best friend lived to 28 leaving two young children, so I suppose I have been blessed to have had 21 years as the true me, we all take it for granted that we will reach to live to an old age and I would never in a million years thought anything like this could happen to me, such is life.

I got ill two years after having breast implants in 1998 and was diagnosed with M.E. in 2003.  Now with hindsight and some research 98% the symptoms that continued since 2000 are the same a silicone toxicity and I didn't know until I did the research last year that implants only have a 8-10 year shelf life.  I thought they were in for life, so I was led to believe (Thanks again to the surgeon who put them in) but I was nieve and trusted what the surgeon said, I originally wanted saline but he talked me out of my fears, saying 'No silicone are perfectly safe'.   My mind has gone in over drive now as what with the PIP scare and the risk of ALCL cancer of the lymphathic system which is said in some cases to be caused by ruptured breast implants.   When mine were removed last October the same time as the lumpectomy, the left one had ruptured (same side as the tumour) and the right ruptured as the surgeon was taking it out.   Now I don't know how many years I was living with a ruptured implant, when they scanned me at the hospital, they told me both implants were intact and no ruptures and they were reluctant to remove them on the nhs, but I demanded they take them out as they had left me so long with a grade 3 tumour, I said that's the least they can do for me and then low and behold, the left was ruptured after all.   But Hindsight is a wonderful thing and if I'd have known now what I didn't know then, I would never had implants in and been ill for so many years.   

Its just been a rare case, the surgeon said there was more chance in winning the lottery twice than someone who is M2F transgender of getting breast cancer which isn't hormone fed.

But everything happens for a reason and there is a reason for this.  I've always been a spiritual person and am trying to remain as positive as possible, doing meditation, visualisation and affirmations, but if its my time then its my time.  I just wanted to share this with others.

[Cindy]

Dear Black Jaguar,

Firstly my sympathy and support.

It is unclear to me if your carcinoma, if it is, is due to silicon poisoning or hormonal medication. Transgender woman on HRT have the same risk as ciswomen once they are on HRT of breast cancer. Your Endo should know that.

All transgender women in familial genetic risk of breast Ca should be screened for BRACA1&2 genetic links and be advised accordingly. If that wasn't done it is a failure of care.

I would demand to be seen by an oncology unit ASAP. I am not familiar with the NHS but that should be routine.

Please, I know you are strong but demand your rights as a patient.

[Black Jaguar]

Hi Cindy... There is no history of breast cancer in my family, I was never given the option for being tested for the gene.  The NHS unfortunately (in my personal opinion here) is failing people terribly in the UK.

I paid for my GRS in 1994, but had the breast implants on the NHS after a 4 year wait, which at the time was standard.  When I was first allowed to go on hormones at 18, I now know that I was put on a post op dose, so no breast development that why I had the implants in.   After seeing the oncologist last in April this year, he said 'no further screening, its a case of fingers crossed now, all the best and if you have any problems contact the Breast Care Nurse.  I am to have a mammogram in September and this will continue every year after.

[Laura_7]

You might look for bioidentical estrogen...
the synthethic forms and forms like premarin might have side effects the natural form does not have...
and there are only slightly coated or uncoated pills suitable for sublingual use, so its supposed to be less straining on the liver...
its even supposed to be more effective because more enters the blood stream...
talk that through with a doctor...

yes, meditation and a holistic approach helps...

wish you luck and serenity


hugs

[katrinaw]

Welcome Black Jaguar

You have my heartfelt sympathies

I am so sorry to hear that you have had such a bad health run.

I am lost for words.... I believe you are strong, and strength can help bring you through these hard times.

I truly hope that you can find resolve and help to get you through this.

L Katy

[Dena]

This post is going to be a little hard for me to write because it's pulling up recent memories. My roommate of 30 year passed away from colon cancer 2 years ago next August. What I learned from that is to evaluate your options carefully because cancer doctors will sometimes give you misleading information on the possibility of a cure. Make sure you understand if what they are doing is only delaying the day of reckoning or if it has a good possibility of clearing the problem. The next issue is the markers in blood test didn't indicate cancer so she had to go through a full corse of treatment before they did an MRI to see if the treatment had any effect. In her case, she went through over 6 months of treatment without any effect on the cancer. I really want to see you live but you are correct about the quality of life issue and if I had it to do over again and knew what I know now, I would have told her to forgo the chemo.
If you decide it's worthwhile to proceed with chemo and have eating issues, let me know. I have produced a small writeup with what I learned from my roommate and I can pop it over to you by PM. If you need somebody to talk to who has seen it from the other side, I offer my services and you can reach me by PM if you don't want it in an open post.

[Black Jaguar]

Thank you Dena and i'm sorry for your loss. Really i'm fine with the situation, you go through all the if onlys' but it only drives you crazy. 

Fate deals you a rough deal, as we all know who have been through what we've all been through, you don't think another life/death lesson would follow in such a packaging.  My big if only is if i'd have been treated like a naturally born female, I would have been diagnosed sooner and treated quicker, than being left for months with an aggressive growing tumour (luckily it wasn't in my lymph nodes, so that was a positive).

By law in the UK if a woman finds a lump in her breast you should be seen with 2 weeks.  Unfortunately my past came back to haunt me again.   I think this has been a lesson for both my GP and the Breast Surgeon at the local hospital and I hope they don't treat or assume with another persons life.   

I did speak to three different solicitors regarding a medical negligence case and they all said 'yes' you have a case but once they found out who the surgeon was, 'sorry you don't have a case' and they wouldn't take my case on.

Corruption occurs in all levels and that's another reason I don't trust doctors, and if the cancer has spread, I would refuse any treatment offered as it only prolongs the inevitable and I won't put myself through the psychological or physical trauma to end up dead anyway.   What will be will be.

Thanks again.