Confused

[Evaf]

Hi all,

I had my routine monthly appointment yesterday and had the results of the ultrasound that I requested to check local response.

I had an CT scan last month and there is no active disease in bones. The last ultrasound in December showed mass in breast reduced by more than 50%. Markers still within normal levels, so all is good.

However, breast ultrasound yesterday gave the same measurements as the one in December 🤔. My onc said that this could be scar tissue as the area is always going to look different. The only way to know if there is any cancer left is doing a biopsy, which he did not recommend at this point.

Anybody knows if there is any other way to find out without a biopsy?

Many thanks xx

[Hidden]

Hi Eva,

Would a PET CT scan be an option in this case? If the mass that is showing up is indeed just scar tissue, then that is great! You have shown a really good response to treatment.

Sophie

[Evaf in reply to Hidden]

It would be great if it is only scar tissue! That is why I really want to know, even if I still need to continue with treatment... Not sure how easy is to get a PET on NHS! Xx

[Hidden in reply to Evaf]

Hi Eva,

You have made lots of good progress judging by what you have mentioned in previous posts, so I wish you all the best!

PET CT scans are available on the NHS. I had one in May 2018 while I was still going through the diagnostic stage. It was the final test I had that let me know the disease was metastatic. But when I asked for another one recently, my oncologist said I wasn't going to have one unless the regular CT scan didn't pick everything up.

Sophie

[Evaf in reply to Hidden]

Hi Sophie,

My oncologist said I am doing very well and to continue doing what I am doing 😊.

I think it is difficult to get a PET scan on the NHS unless it is absolutely necessary, probably they are too expensive! Or maybe the CT is enough.

How are you doing with COC? Any side effects? Is your doc ok with it?

Eva xx

[Hidden in reply to Evaf]

Hi Eva,

That is really good news!

I think you are right about the availability of PET CT scans on the NHS. I'm sure it's all about the money. If I pressed my oncologist, I'm sure she would admit that's the case.

I'm doing well with the COC protocol. It's been two months since I started on it. So far so good. I just feel a bit nauseous sometimes, but I think that's down to the metformin. I'm fine once I have had something to eat or some water. My GP does not support it and nor does my oncologist. When I saw my oncologist last month she had in her hand the letter that my doctor from the clinic had sent her. She said there was not enough evidence to support the metabolic approach to treating cancer, but that it could work! That is the closest she would come to supporting my decision. I'm sure she cannot lend me any further support due to NICE guidelines. But I'm fine with that. I am going to give the COC protocol two years and then see how I am doing after that time. If it has not made any difference or if my condition deteriorates then I will look into other options.

The way I look at it, it must have taken years for my breast cancer to become metastatic, so it is going to take some time to reverse the damage that has been done. I have already seen big changes in the 13 months since I started treatment. The breast tumour continues to shrink and the nipple looks more normal. It was inverted, but now it looks more like the other one. My last four CT scans have also shown that I am stable and I feel fitter and healthier than I have ever done. I have also lost 5kg since January, which is probably down to the changes in my diet, exercise and lifestyle. I wasn't actively trying to lose weight, but I am glad I have. I put on some weight right before my diagnosis and I want to do all I can to ease any burden on my body and that includes shifting any excess weight.

Dr Callebout has ordered some tests for me, so I am having those done next Wednesday and then I shall see what else I can add to the mix once I get those results.

Sophie

[Evaf in reply to Hidden]

Hi Sophie, I am glad you are doing well on COC. I am also carrying on with the diet and everything else for at least two years.

If I manage to achieve no evidence of active disease (perhaps I have already achieved it?) and stays like that for a while, my ideal plan would be to stop Ibrance in the future and continue with only Letrozole and add COC (so similar to what you are doing now).

I am being super positive here as things can change and might not have so many options, but that would be my ideal plan...

What kind of tests is Dr Callebout ordering? Is he checking iodine levels?

Eva xx

[Hidden in reply to Evaf]

Hi Eva,

Thank you! I am continuing to improve my diet and trying to be proactive about things too. It just makes me feel that I have some control in my life.

Does your oncologist think you might be able to stop ibrance in future? I also want to stay on letrozole, as it's working so well. My oncologist told me she hopes I will be able to stay on it for many years to come, so that was encouraging. Have you had an oophorectomy? I can't remember if you have mentioned it before. I am still getting zoladex injections every month to suppress the function of my ovaries. My oncologist brought up the idea of an oophorectomy again last month (it's just the second time she's mentioned it since we first met last May) but I still want to keep my ovaries. Then when I saw my GP yesterday for my zoladex injection she said I will need to have the injections every month for the next decade or so if I don't have an oophorectomy. It's food for thought, but I am just not ready to part with my ovaries just yet if i can help it.

I'm not sure if iodine is being checked next Wednesday. I am having a urine and blood test performed to check for lipoprotein factors/ratios, chronic inflammatory markers, oxidant stress factors, essential amino acids, and another 14 pages worth of factors.

Sophie

[Evaf in reply to Hidden]

Hi Sophie,

They did mention oophorectomy at the beginning if letrozole did not work. I still have a few years of injections (those Zoladex implants are pretty scary!) and I have never been fond of needles! But not ready to get rid of my ovaries just yet...

Evaxx

[Hidden in reply to Evaf]

Hi Eva,

I was told I would still need to take letrozole even if I have an oophorectomy. Letrozole is an aromatase inhibitor, and zoladex also works to block oestrogen production. The only difference is I would be able to stop the monthly zoladex injections. Do you have a local anaesthetic when you have your injections? I do, and that makes a big difference. Maybe if I was a lot older I wouldn't mind the idea of losing my ovaries, but it just feels that I have already lost so much with this disease and I don't want to have surgery unless my ovaries become diseased. Then I would have them out in a heartbeat.

Sophie

[Mindysooty in reply to Hidden]

Hi Sophie

What's the COC protocol and is it done alongside chemo/hormone treatment? I see your onc and GP dont support it so is it something you've done privately? Thanks.

[Hidden in reply to Mindysooty]

Hi Mindy,

The Care Oncology Clinic works alongside standard of treatment care, so if you are having chemotherapy, hormone therapy or anything else prescribed by your oncologist then you can go ahead and have it alongside conventional treatment, and yes, I pay privately. They prescribe off-label drugs (metformin, mebendazole, doxycycline and atorvastatin) to patients in a bid to shut off various metabolic pathways that fuel cancer.

Sophie

[Mindysooty in reply to Hidden]

Ah I see. Thanks for the info thats really interesting.

[Hidden in reply to Mindysooty]

You're welcome.

[Evaf]

Hi Sandra,

Many thanks for your informed response! The doctor already said about not doing a biopsy and I would not like to do it either. So.... the CT scan could be a better indicator. The problem is that they never mention breast in the CT report. I will ask the doctor next time.

Many thanks xx

[Evaf]

Many thanks, Sandra. You are more useful than my doctors! They never mentioned this to me and I will definitely ask them.

Thanks for all your help 💕

[Evaf]

I find this so annoying! Because we are stage 4 they do not even pay attention to the primary... unless it has grown...of course. It seems that it is not so important to find out if there is any cancer left as we will have to continue with treatment anyway...