Thank you for your message @Kay0987 it’s really kind of you to respond. You are absolutely right I am very lucky with the care I have already received and am currently getting. Staying positive is so important and this is just the beginning of this new journey but I’m sure I’m going to get through it ! H x
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My onco wanted me to do an MRI. Which I did yesterday. Then she wanted me to see a breast surgeon which is scheduled on 5/29. She also wanted me to do a genetic testing which is scheduled virtually on 7/29.
My biopsy result is as follows:
grade 2, stage 2. Negative on progesterone. HER2 positive.
Her plan for me is chemo to shrink the tumor and if successful she said I might only do a lumpectomy.
Please what is AI again and why are you opposed to it. Thanks!!!
By the way HER2 positive responds to treatment with herceptin. When I was first diagnosed with breast cancer this was still not available but one woman campaigned for it on the NHS and it is now prescribed for many women with HER + cancers. It has few adverse side effects or so I believe. Don’t take my word for it but check it out.
Seagulls
Hi @pneuma AI stands for Aromatase Inhibitor. It is a drug given to post-menopausal women whose breast cancer is fed by estrogen (Er+). So you’ve said that you are Pr- and HER2+ but I can’t see where you’ve said the Er score. If you are Er- you won’t be given endocrine treatment which is what AIs are. If you are Er+ and premenopausal you would be prescribed a different kind of endocrine treatment called Tamoxifen which is not an AI.
The reason there is a debate amongst women who are ER+ and therefore are prescribed endocrine treatment (either Tamoxifen or an AI) is that there can be side effects to the drugs. The side effects tend to be caused by the reduction in oestrogen so are similar to menopausal symptoms.
Not everyone who takes endocrine treatment gets side effects, some people get side effects that they can control by other medications and exercise but some women get side effects that are very debilitating. There is no way of telling in which category you will fall until you start taking them. They are powerful drugs and research says that they have saved many women from developing stage 4 breast cancer which is incurable.
The added complication however is that endocrine treatment tends to be prescribed for all women with Er+ breast cancer when, in actual fact, many may not be at risk of developing stage 4 or even having a new primary as 70% of women who have had a primary breast cancer never get another. This is particularly true for older women because if there was to be a recurrence of Er+ cancer, it can often be a long way in to the future and, to put it bluntly, death may have already occurred due to something other than breast cancer. But, once again, there is no way of precisely and accurately predicting who would be in that 70% and who wouldn’t so it comes down to quantifying risk of not taking endocrine treatment against quality of life being degraded by the side effects of it. It is a very personal but polarising debate.
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I remember my onco said one of the side effects in her planned treatment for me is numbing of extremities that may/may not be permanent. IS that herceptin?
I definitely will have a LOT to decide soon.
Thanks guys for the infos.
I will always choose quality of life over anything. I don’t even like the way of poisoning our whole body to get rid of a cancer cell.
IF not for my husband, I won’t even have my lumps checked out. Foolish, I know but I have always preferred natural treatment always.
I actually was prescribed a really strong ibuprofen dosage when I had my tooth extracted and I didn’t even buy it.
Fortunately for me, I didn’t even need it. I don’t like pain killers. I just don’t like that it’s highly addictive. So many people lose their lives over their addiction to it.
I have not even tried weed ever in my life but if my cancer ever become unbearable I would prefer edibles. Does edible really helps in pain?
What really is the effect of edibles in cancer? I mention this because I would rather take edibles that whatever other drugs they will prescribe me to alleviate side effects.
Anyone went the edibles route and did it help in anyway?
Hi pneuma
I’m glad to hear you’re now on the path of a treatment plan. It is something tangible to deal with rather than the immediate void following initial diagnosis.
AIs are aromatase inhibitors, a form of hormone therapy, and are a group of drugs which suppress the body’s production of oestrogen. After menopause, the body still produces some oestrogen: an enzyme called aromatase converts other hormones called androgens into oestrogen. AI drugs block this action, thus hoping to starve cancer cells, specifically those that are highly receptive to oestrogen and dependent on it to thrive.
I am not against AIs.
I am against the biased promotion of them when the complete picture is not explained.
All drugs come with their own risks. I weighed up the risk of some of the very serious, albeit rarer ‘but still significant in my opinion’ side effects against the marginally reduced risk of breast cancer returning that taking AIs offered.
I, personally, fear some of the damage that could be done by AIs more than I fear cancer.
I agonised over this for 5 months.
Eventually, I anxiously tried Anastrozole (one of the AIs) for 10 months. However, I experienced the common side effects strongly. It seems the lack of oestrogen affected my body in a variety of debilitating ways and physically aged me 20 years. This does not happen to everyone. (7 months after stopping them I feel almost back to my old self.)
These two factors (the side effects I did experience, and the fear of the far worse) made me decide to take my chances without hormone therapy.
For people who do not suffer bad side effects and who do not fear the more remote but devastating or fatal possibilities would probably opt to take AIs in the hope that they might save them a recurrence.
Good luck 
I had lumpectomy and managed very well with just Paracetamol which is not addictive . I do take Ibuprofen for MSK problems and that isn’t addictive either . I would say again to be a little wary of natural remedies as they have side effects and interactions and unlike licensed drugs which have been studied extensively there is very little research so it can be hard to know what may interact with natural remedies or how they may interact with each other . If by edibles you’re referring to cannabis or CBD oil then I’m aware of people who feel they have been helped by it in its various forms for various problems. However I’m a Nurse and I’ve seen a lot of people with problems related to cannabis use particularly in combination with alcohol as well as terrible problems related to just alcohol itself .
If you’re reading this then you may think that I’m one of those people who just rejects alternative treatments which is not the case as for years I saw a Homeopath and my first port of call for my MSK problems isn’t a Dr or a Physio it’s actually my Osteopath . If I get a UTI I don’t ask for antibiotics I drink lemon barley water and take D Mannose until it goes away.
I’m very sorry about your diagnosis and I know your mind is probably spiralling right now . Have the MRI and the genetic testing - whatever you decide to do it’s better to do it knowing all the relevant information .
As regards AI s / Tamoxifen in particular that may be a decision for another day as in most cases ( though not all ) cases they are offered towards the end of the treatment plan. As @Tigress has already said as you are PR- if you are also ER - as well then you won’t be offered them. One reason why some of us complain about AI s is not because they give us nasty side effects it’s more to do with the length of the treatment as I think most of can cope with side effects for a while - it’s the the thought of how long we will have to put up with them and what else could happen to us in the meantime.
Unfortunately when you have BC unless you want to say to your medical team that you will follow their recommendations - obviously that’s not who you are and it’s not who I am either , then you get to make the decisions for yourself and it’s scary and even if you’re a health care professional like me there’s a things you don’t know . It’s a crappy situation and you do the best you can at the time.
I may not be in agreement with everything you have said but I don’t envy your situation right now and I’m thinking about you with love right now . Xx
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Absolutely. I get so upset when I see posts from women about to risk recurrence by not taking AIs . They are game changers . Thanks
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You do not actively create a risk of recurrence by not taking AIs. They might mediate the risk that is already there.
Survival rates as illustrated by the NHS Predict tool online using my profile suggested mine was 93% at 5 years without hormone therapy or bisphosphonates, or 94% with.
( A 69% chance of survival at 15 years without, or 75% at 15 years with them. )
Recurrence risk is a different thing, as you can have one or more primary recurrences without dying from cancer. ( A secondary metastatic cancer would, however, eventually be terminal if you didn’t die of something else in the meantime. )
I was given a 12% recurrence risk if I had hormone therapy and bisphosphonates. I don’t understand how that figure was arrived at. I’ve never had a productive enough conversation with an oncologist to understand my recurrence risk without these adjuvant therapies, and when factoring in the fact that the only node involved did unfortunately have extracapsular spread. You would think that would have been something an oncologist would have be keen to impart but none did, so I’m none the wiser.
AIs. ‘Game changers’ ? They are another tool in the box, another way to tackle the problem. Nothing yet is a silver bullet, a cure or even guaranteed protection.
(I hope I offer gentle, balanced, reasoned debate rather than angry, blinkered, intransigent proclamations, because they’re really not helpful.)
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I agree that they are definitely game changers.
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AIs are definitely game changers
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The stats show that AIs have massively increased the survival rates for women with primary breast cancer .
That doesn’t mean to say that all women on them won’t have a recurrence .
It’s a chance we take , a crystal ball would be fantastic to see what will happen at the end of my 5 years!
We all know they have side effects , which we can try to manage with lifestyle measures . Possibly not totally .
I have friends who have osteoporosis and/or osteoarthritis, who haven’t had BC . Both had early menopause and weren’t offered HRT .
Both have broken bones and have painful joints .
I also know women who have been on AIs for 5 plus years who have managed the side effects and no recurrence .
It’s an individual decision .
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Which last assumption is this??
I have followed this debate with interest. I have always felt lucky, in a strange sort of way, that I have TNBC, so AIs never entered the discussion. I have, in general, found that oncologists are keen to treat, even when the apparent benefit is low, and that in general there is a poor understanding of relative versus absolute risk. To tell someone their risk is reduced by 50%, without telling them, what from to what to, is always going to result in people feeling they need to take these drugs. Of course the same sort of considerations apply in relation to deciding whether to have chemo or any other intervention.
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Thank you, Coddfish.
Hi Misty. OMG quick left turn have you heard of the TV show - Yellowjackets? I suggest you watch it if you are into horror. There’s a character there that’s an instant fan favorite and yes her name is MIsty. LOL. So HI Misty.
Anyway on serious note.
I have been searching for treatment that I want. I prefer not to have chemo and do a mastectomy on my right breast. And since I am her2 positive then I would take those AIs I guess.
I have decided that’s what the route I will go. That’s what I will say to both the breast surgeon whom I will meet tomorrow. And my onco.
May I ask if you have chemo or radiation? I am not an expert but probably that contributed to bad side effects?
I have always been oppose to a treatment that poisons my whole body. And I believe chemo and radiation will NEVER be a route I will take.
I will see what my onco and breast surgeon says about my decision.
Thanks.
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Thanks. I decided to do a mastectomy on my right breast. No chemo/radiation. I never liked the idea of poisoning my body. Since I am her2 positive I think I will benefit in taking AIs. Since I will not do chemo/radiation.
I will post my results here in taking AIs if I will be affected by common side effects without chemo/radiation treatment.
But of course I will take into consideration what my breast surgeon and onco will say about my decision.
Hi Pneuma! Misty I’m sure will answer but I did want to comment on AI’s. Unless you are estrogen positive they will not be offered to you. I know you are HER2+ but that is not the same thing.
Also, Her2+ is an incredibly aggressive breast cancer. They have immunotherapy for it now and that has changed the trajectory on it completely. But you can only get the immunotherapy with chemo. It’s the standard treatment for it. Of course you can always decide to skip it but a mastectomy won’t be equal to it. In order to have the best prognosis you would need to follow the proper protocol for treatment which is chemo/immunotherapy. I highly recommend asking your oncologist for the statistics in line with your particular diagnosis so that you understand why the particular treatment is recommended. Furthermore, I would like to add that yes you can say that chemo poisons the body. But so does cancer and sometimes it takes one poison to get rid of another poison.
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Yes indeed @Kay0987. This goes right back to the mountain lion in the fridge, but from a different perspective to imposter syndrome.
I spoke with my onc a couple of weeks ago towards the end of my rads, and said, now that I’ve had mastectomy, chemo and rads I feel I want to know now how long before I would be struggling if I had done nothing at all, given my fast growing grade 3. His reply was that I’d be finding day to day living a real struggle in a couple of years. Very sobering at the age of 57. I really want to live long enough to collect my state pension at least!
You have to weigh up risk v reward. It’s relatively recently that we’ve had this option.
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