Letrozole with Type 1 Diabetes Accept or Refuse?

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Hello everyone, I am 66 yrs old, have ER+/HER2+ IDC, have had 4 x EC, and now mastectomy booked for 21 September. After surgery I am being offered Letrozole for 5 years and need to decide whether to accept or refuse. My concerns are that I have Type 1 diabetes and High cholesterol. I read that Letrozole can increase blood sugars and raise cholesterol. I take Bezafibrate 3 times daily for cholesterol which is now 6 but would be 10 without medication and diet. My HBA1c is above target at 63. According to NHS Predict the letrozole will reduce my risk of BC recurrence by 4%. Is it worth the risk? Has anyone else faced a similar dilemma? How did you decide what to do? All advice and experiences would be gratefully received. Many thanks Tulip x

  • Hi Tulip29, I’m surprised you have not been offered more than one option. There are lots of different hormone treatments, I admit I don’t know how they all work in conjunction with diabetes and cholesterol. Maybe have a word with your oncologist or breast care nurse and see what other options there are for you. I’m on tamoxifen for 5 years.  As much as I didn’t really want to take them I decided that even though it may only be a small percentage it was better than none. Coupled with all the other treatments and surgeries it all adds to the percentage so I wanted to give me myself as much chance as possible to prevent it reoccurring.

    As they say, they can’t predict who will or won’t get reoccurrence as everyone is different. 
    Wishing you the best for your upcoming op.

    Hugs from cuffcake x x x x x

  • Hi Tulip

    I’m a diabetic on insulin, and have been on Letrazole for a few months now. At first my blood sugars were more unpredictable than usual, and generally a little higher, but not alarmingly so. I’m on a basal / bolus regime, and a freestyle libra sensor to keep a close eye on things, and am finding it’s quite manageable. 

    Good luck with your decision. 

  • Thank you Cuffcake. Hope you are tolerating the tamoxifen OK without too many side effects. i appreciate your thoughts on the subject very much. from Tulip x

  • Thank you CarrieDecember, It's amazing to find another Type 1 diabetic also on basal/bolus and coping with cancer treatment. I knew there must be someone out there! I'm glad to hear a positive story and that you are managing OK so far. How long was your blood sugar hard to control for? Also has the Letrozole impacted on your cholesterol? Thank you for posting from Tulip x

  • I’d say it’s still a work in progress, the Libra sensor is invaluable as I can see rises happening and can intervene early. I use the shuggar app, rather than the libre one, as it  can send my readings through to my Apple Watch which makes it really easy to track. Staying in top of it, although very doable, is hard work, but I’d worry about recurrence without the Letrozole, so as with everything it’s a balance.

    I’m lucky that my cholesterol has never been a  problem, and the Letrozole doesn’t seem to have had any impact there, Fingers crossed it will still be ok at my next check up. 

  • Hi, I’m type 1 on dexcom with closed loop pump. Thanks for the above as it’s helpful. I’ve just been diagnosed Feb 25 with LGSOC debulking surgery next week. Any more tips for dealing with cancer and being type 1? 

  • Hi Positive cat, I am sorry to hear about your diagnosis and wish you well with your forthcoming treatment. Having cancer with Type 1 diabetes is certainly a challenge. These are my tips having learned from experience...

    1) Inform your diabetes team of your diagnosis and treatment and ask your oncologist to copy your diabetes consultant into all clinical letters. Ideally the two teams should work together and be part of the same multi disciplinary team. Sadly I couldn't get my oncologist to access the expertise of the Diabetes consultant, much to his annoyance. You need to be your own advocate and keep reminding people about your diabetes and the special considerations and accommodations you will require.

    2) For surgery I'm sure you know that you should be first on the list so that you are without food, and off the pump, for the shortest possible time. (I was on basal/bolus when I had my op but am now on Omnipod Dash not closed loop. (Started 10 days ago!).

    3) On surgery day I took all my meds in their insulated container down with me to the operating theatre and asked the anaesthetist to check my BG using my cgm and not prick my finger. She agreed to this. As you are on a pump you may be able to keep this on throughout the surgery if it is placed well clear of your abdomen and not likely to interfere with a blood pressure cuff. (My blood pressure cuff was placed on my ankle). Otherwise you will need to keep your pump on and activated right down to the last minute and only deactivate and remove before they put you under (unless your diabetes consultant recommends an alternative plan?) If this is the case you will be given insulin or glucose through a drip if necessary.

    4) You should be given an estimated time for the surgery. Remember this is only an estimate and you will need to add on more time in the recovery room when you will not be alert enough to set up and activate your pump if it has had to be removed.

    5) Ensure you have back up insulin pens in your kit with viable insulin cartridges. Also your ketone meter and in date test strips.

    6) Ask the anaesthetist as many questions as you wish if you have any worries and concerns about managing your BG during the operation.

    7) Once in recovery you are under a different team so make sure they have advance information about your diabetes.

    8) If possible have a friend or family member ready and waiting for you when you come out of recovery who understands diabetes and can help you reattach your pump and cgm if either have had to be removed. Also if they bring you food be sure to check the carb content, especially if home-made and not in a packet with carb info.

    9) If you will need chemotherapy be sure to look into all the details of the prescribed meds and their side effects. For example Paclitaxol uses alcohol as its carrier and each dose contains a wineglass full. You may want to see if there is an alternative drug or make a special plan with your diabetes team as to how to manage this.

    10) Chemotherapy drugs are usually given with anti-sickness meds taken before delivery and for several days afterwards. The worst culprit is the steroid Dexamethasone which will raise your BG and create a big 'wall' for the insulin to jump over. I had to double all my insulin doses to cope and still did many corrections. In theory the closed loop may be able to handle this but once again you may need to make a plan with your diabetes team. Another thing to note is that the steroid stays in the body for several days after you take the last dose so any plan needs to take this into account. My BG took 10 days to get back to something reasonable. N.B. I know of another diabetic on closed loop who refused Dexamethasone completely. You have the right to do so and Dexamethasone will not be the only anti sickness drug you are given.

    11) After my first chemo I was given injection vials of Filgrastrim to administer for 5 days afterwards in order to bring up my white cell count. It is injected into the abdomen. I knew nothing about this until I found it in my post chemo meds bag! Beware! This drug can induce massive hypos! A little known side effect. I had to stop using this so had to wait 4 weeks between each chemo dose for my blood count to come back up.

    12) If you do need hormone therapy as well, it can raise cholesterol. I also developed chronic insomnia. I stopped the meds after 11 months and am now being treated at the London Sleep Clinic. 

    And finally, do take steps to reduce levels of stress as this, as you well know, causes BG to rise and compromises the immune system! I signed up with the Penny Brohn Cancer Centre and do many of their online classes. They also have recorded sessions on You Tube. They have a treatment support programme, relaxation, clinical hypno therapy etc. I also get help from my local cancer support centre charity for complementary therapy - mindfulness, breathwork, art therapy, relaxation, Reiki healing etc. I recommend the app called Insight Timer which has plenty of great yoga nidra sleep meditations which I listen to to help me drop off to sleep. Embrace all the help you can find.

    I also recommend eating as healthily as possible. Plenty of leafy greens, oily fish, (anti-inflammatory) and omitting all processed foods. Good gut health will also help to boost your immune system. Penny Brohn have online sessions about nutrition which are excellent.

    Wishing you all the very best with love from Tulip xxx