Is it just a matter of protocol? Do I really need this?

Hi, first time here.  I don’t want to be just protocol and not an individual.  Recently diagnosed with stage 0 DCIS and had the lumpectomy.  I am almost 67.  31 years ago I had the same thing in the other breast–stage 0 DCIS but back then they didn’t do lumpectomies.  I had a mastectomy and lymph node removal.  I had no choice.  So I went 31 years cancer free in the good breast until now. I have an appointment with an oncologist at the end of the week and I am fearful she will push hard on hormone therapy because it’s just “what’s done” with any estrogen receptor cancer (even though 75% of them are).

I have other health issues.  I have borderline stage 3 chronic kidney disease that I don’t want getting any worse, and ulcerative colitis (which I’ve been taking immune suppressants for).  So considering my other health issues, my age, the fact that both cancers were miniscule, I won’t be getting cancer in the other breast again obviously, and given they took quite a bit more than they needed to this time, do I really want to subject myself to osteoporosis, heart disease, bone pain and other complications with the years I have left? 

I will go for radiation, but taking something for 5 years with all the possible health risks to my already aging body, seems more like quality of life issue for me.  The cancer is on the left, so I have to worry about my heart with the radiation as it is.  I’m thinking regular screenings might be enough.  The remaining breast is quite small.  What would you do if you were me?

Hi Jessallie

I’m sorry you’ve found yourself back with DCIS after all these years.  I’ve had DCIS twice too… but any treatment you are offered will be tailored to fit your exact diagnosis and take into account your age/health/previous history/ stats for your present DCIS ( eg Predict) . After my second DCIS diagnosis, I was ER+ 3/8 so they left it for me to decide whether I wanted to take tamoxifen as the benefit was negligible… ( I did end up taking it and was lucky to have no side effects) … however after 2 years on tamoxifen I developed another BC , this time invasive and ER + 7/8 …l so have been advised that it is very much in my best interests to take letrozole as my cancer was highly Hormone receptive.   I’m sure your ONC will go through everything in detail with you and help you to weigh up all the risks/benefits , as mine did with me, in order for you to make an informed choice about hormone therapy.   At the end of the day any decision is yours… protocol is what is followed after you have made a decision.   :four_leaf_clover: Hope all goes well for you

Hi Jessallie

I’m so sorry you’ve got a recurrence on top of all your other issues. I won’t attempt to advise you - it’s your body and you must weigh up the pros and cos - but I thought I’d add a couple of thoughts.

Not everyone responds badly to hormone therapy and, although the scientists will argue that it’s impossible, brand can make a big difference too when it comes to side effects. I suffered really badly once I started taking anastrozole but, after two periods off it, it was evident that the AI was not the cause of my ongoing problems - it was the original chemo that did the damage that slowly emerged once I’d finished treatment. Meantime, going from size 8 to 12 and experiencing thinning hair as a result of taking the AI seem a small price to pay for me.

The other point was the effect of radiotherapy on the heart. A lot of progress has been made on this over the years and, with the special measures radiologists take, the effect on the heart is significantly reduced now. I think these are questions you need to discuss with the experts. I had left-side radiotherapy as well as radiotherapy to the collarbone and the heart issue was clarified for me (you didn’t mention the effect on the upper lung?). You will get a session with a radiologist before you start treatment so you should go armed with the questions that concern you.

The fact is, oncologists are obliged to point out all the potential risks because, for some, they may happen. For most they don’t.  Similarly, the leaflets have to do the same so we all hear about things that we would otherwise never find out. A simple search on Google (never recommended here) might provide you with screeds of information to support/contradict your theories but how up to date are they and how relevant to your specific cancer?  

I know exactly what you mean about quality of life. Mine has been badly hit but the alternative was to succumb to breast cancer. Slowly I’m working my way back but there’s never a ‘cancer-free’ day even though I am free of cancer. I’m angry because none of this was listed in the side-effects of chemo - but I still would have done it. You’re only 67, the same age I was at diagnosis, so may have 3 to 2 decades remaining of good quality life but only you can decide what constitutes an unacceptable risk to you. 

I hope you arrive at a decision that impacts best on your long-term health. All the best, Jan x