Hi
I recently had what was probably stage 3 breast cancer (was too scared to ask what stage it was!), a mastectomy, chemo and radiotherapy. Initially I had an expander implant but had to have it removed 6 weeks ago because of reoccurring seromas and a possible infection.
The doctors have now offered me Zoledronic acid / bone infusions but it comes with a risk of osteonecrosis of the jaw and teeth becoming loose. I’m unsure whether to go ahead with it because I am upset about how my chest looks without my breast and can’t bear the thought of any teeth falling out too! Apparently the risk of osteonecrosis is about 1% after a year and 2% after two years, but it can be higher if you have poor dental heath. I haven’t really got the best teeth - I had two implants and have had root canal two or three times. One root canal treatment was three months ago and still feels a bit tender and I don’t think my gums are in brilliant condition. So I’m worrying!
Can anyone please let me know if they have had Zoledronic acid and if they had any issues with it, to help me make up my mind? Thank you so much for your help x
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Hi Asmirny
i had 4 sessions of zoladronic acid, every 6 months over 2 years and can say i had no side/after effects at all. The % is very low for osteonecrosis and i felt it was worth the risk. Had mine in 2019-2020 and finished thankfully the month before covid lockdown and to date have no problems ( im 73 this year ) mine was triple negatve bc in 2017 and again in 2019 but every day is to me a blessing.
just give it a lot of thought and maybe you will get some more positive replies on here to help you decide. Good luck with your journey. Jan x
I have also been offered Zoledronic Acid every 6mths for 3 years but looking at all the side effects and the fact that I have a lot of old crowns and receeding gums I have decided that it is not worth the 1% benefit even thought I am at high risk of return. Good Luck with making your own decision, but it has to be your own decision ?
I’m due to start this treatment. They won’t put you on it without a dental check up first & for your dentist to say its OK. I was given a form by oncologist to give to dentist to sign.
Might be worth speaking to the dentist before making your decision?
You make a good point about consulting the dentist. The feedback from everyone else has been helpful for me too. My oncologist has suggested Zoledronic acid for me too and I have been given an appointment to start infusions in September. Like everyone else I am concerned about the side effects and low % gain. My breast cancer came back a second time (first time 12 years ago). 1st time grade 3 - lumpectomy chemo radiotherapy, didn’t cope with aromatase inhibitor side effects so stopped taking those. 2nd time grade 2 tumour plus lots of invasive DCIS foci throughout the breast necessitated mastectomy. Tried Tamoxifen, again had intolerable side effects so stopped that. The idea of some of the worst side effects with Zoledronic acid is concerning me greatly so understand how others feel. But as I have terrible osteoarthritis and already had spinal surgery for herniation spinal degeneration and waiting for a knee replacement so any chances that bone strengthening infusions might help is worth consideration. My worry is it could make it worse as the information on Zoledronic acid seems so contradictory. I’m seeing the Macmillan nurse next week for my prosthesis so will discuss with them and see what they say. If anyone has any other thoughts on this do let me know if you found any positive benefits that overload the negatives please ? thanks
Good you’re seeing the nurse this week to ask questions.
I had my dental check up this week & the dentist explained it to me as there aren’t really any affects to teeth/oral health unless you need dental treatment during treatment. It’s fine to get crowns or root canal but the risk is if you get a tooth out on treatment that the bone doesn’t really want to heal after it. She told me that every infusion lasts for 5 years so if you were to get 2 infusions over a year you’d be at risk of side affects for 10 years.
Not sure if that helps but it was certainly more informative than my oncologist
Hello.
Following a double mastectomy - two breasts, two different cancers - with only 1 node positive in the end (which wasn’t one of the sentinel ones, so deep gratitude to the surgeon who spotted it during the mastectomy surgery), but without being able to know that in advance, I opted for the more radical axillary clearance (on that side) as a more tangible look at the situation rather than blindly zapping my armpit with radiotherapy … which I did have on that chest side as adjuvant treatment for the ‘worst of my two cancers’ - invasive lobular. (As a result of clearing out most or all of the nodes on that side, I then went on to develop lymphoedema in that hand/arm for my trouble … within 6 weeks!)
Anyway, along with Anastrozole to inhibit the cancer-feeding oestrogen, I was recommended to have the 6-monthly zoledronic acid infusions, firstly to counteract the osteoporosis effect of the Anastrozole, but secondly because - in using this acid previously to treat that common weakening of bones in older people - it was noticed that an additional benefit seemed to be a reduction in the incidences of recurrence of breast cancer in those who had had that previously. (It has this effect, apparently, because it changes the way the bone cell regeneration works. That in turn makes the bone environment less hospitable to breast cancer cells which seem to like laying dormant in bone for long periods before developing.)
I had my dental check first and with everything looking stable on that front, I went ahead with the zoledronic acid because, at that point, my absolute focus was on fending off cancer. However I am rethinking that decision because:
After each of my two infusions so far, the symptoms already caused by the Anastrozole (such as the bone/joint pain, fatigue, hot flushes, sleep disturbance) all worsen, and in addition I feel generally unwell for a few weeks (slight nausea sometimes, slight headaches sometimes, daily indigestion, intermittant digestive disturbance). More worrying, however, is the ache I now get quite often in my right thigh (to go with the hip/groin stiffness and soreness I was already beginning to notice pre-cancer). This is a noted symptom of zoledronic acid treatment one is warned to flag up if it occurs because, paradoxically, it seems it is not uncommon for thighs to develop stress fractures eventually. Hmmmm. There’s always a trade off.
Each individual’s body reacts in its own unique way of course. This just my experience. These are just my layman’s opinions and the science as I understand it. Always do your own research and seek further advice from your doctors. Keep asking until you feel you have enough info to make a decision. All we can do to try to help is throw our collective experiences into the pot. Good luck, whatever you decide. (I haven’t yet!)
Apologies for the long-winded response, but knowledge is power. I, too, would be interested to read anyone else’s take on this issue.
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Hi, I had zoledronic acid iv infusions ( one every 6 months for 3 years) Finished last year. I can honestly say I had no problems or side effects whatsoever. Maybe I was lucky, who knows. I did visit my dentist for 6 monthly check ups throughout and my dentist always checked me very carefully. Everyone is different but in my case everything was fine. Good luck and take care.
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Thanks for your response, sunshine21. It is always helpful to read the other side of the coin. (I presume you were/are also on an aromatase inhibitor.) Awaiting results of recent Nuclear Medicine Bone Scan - see if that throws up any obvious weakness. I will discuss further with an oncologist … when I find one. (Dwindling cancer team at my local hospital.) MistyK