Ask your doctor questions

Asklepios is in de Griekse mythologie
de god van geneeskunde en genezing.

How do you decide together with your doctor?

Once you have been diagnosed with breast cancer, you and your doctor and/or nurse specialist will look into which treatment is possible for you. Your breast cancer diagnosis can cause tension and uncertainty. It will probably also raise questions about the disease and the various forms of treatment. The B-Bewust checklist for men with breast cancer contains sample questions and is a practical tool which can help you prepare for conversations with healthcare providers. You can find the B-Bewust checklist with explanations and a video from cancer surgeon Carmen van der Pol, UMCU here.

Johan’s experience, 50 years old: he talks about how emotions hit him after he was diagnosed with breast cancer and that, in hindsight, he would have liked to have decided for himself:

“In my case the emotions hit me after hearing the breast cancer diagnosis. There are people who go in search of treatment. Others who just let it happen. But you have to make choices. I think those choices must be named. You are entitled to information about various treatments. I missed out on this.”

“The tricky thing is that you also have to be a serious conversation partner as a patient with the practitioner. That’s not always easy. Sometimes you have a very short time in which you have to make many decisions. I would therefore argue that the information should state: ‘there is always a choice; a tailored solution”

Three good questions to support a choice

Men with breast cancer may be looking for support with choosing the right treatment. If you want to decide with your doctor which treatment is best, there are three questions which can help you with this. (source: 3good questions:

1. What are the options?

2. What are the advantages and disadvantages of these options?

3. What does this mean for me?

Which choices to make?

Treatment choices are different for every patient. You can consider, for example, whether or not to have surgery, whether or not to have radiotherapy, whether or not to have chemotherapy and whether or not to undergo hormone therapy. Your practitioner can use statistical programmes such as Adjuvant On-line, Predict or a decision tree on breast cancer such as the Oncoguide from IKNL. These are statistical programmes or decision trees to estimate the risks and benefits of supplementary treatment. These can be discussed with you in order to clarify the choices.

Patients’ experiences in making treatment choices

You can read about the experiences of other men who have been treated for breast cancer, explaining how they chose their treatment.

1. What are the options?

Henk’s experience, 69 years old: he says that after the conversation with the surgeon, he requested a second opinion, because he preferred to have more cut away and not undergo radiotherapy.

“I think there are options other than radiotherapy. What do you mean? You can also cut away a great deal. I am a man, I really don’t care that my breast is gone.”

“I called another hospital for a second opinion. All papers and documents were sent there. I told the surgeon the whole story. That I preferred removing more of the breast than to undergo radiotherapy. The surgeon immediately agreed. That’s how it went. I have no breast on one side. But I’m doing very well.”

2. What are the advantages and disadvantages of the options?

3. What does this mean for me?

Pieter’s experience, 49 years old: he talks about the pros and cons of chemotherapy and what explanation he received from the doctor with help from Adjuvant On-line (statistical programme) to calculate the risks [This programme is currently out of use, alternatives are: Predict or Oncoguide decision tree breast cancer IKNL]. He also explains what the advantages and disadvantages of chemotherapy are, and what not opting for chemotherapy means to him.

“You have a very large database, in which you can calculate the chance of recurrence and survival, based on your characteristics (how old you are, how healthy you are, how large the tumour was, how quickly it grew, all of that type of data). That is a general statistical chance. To me, as a specific individual, only 0 and 1 apply, either you survice or you die from it. In my case, chemo gave me a 4% better chance.”

“I have explicitly chosen not to go for chemo, specifically in order not to run the risk of a side effect to one or more nerves (neuropathy). I did not think the benefits outweighed the possible side effects. Chemo can also go wrong in such a way that, as a 45 year old man, you will no longer be able to do simple things like going shopping. That is a choice that I have made together with my doctor and wife.”

Second opinion

Patients always have the right to request a second opinion from a doctor in another hospital. You can read more information about requesting a second opinion here.