Thank you, I am not in the breast cancer field but I am a consultant physician investigating and diagnosing patients with lung cancer whose treatment is then handed to oncology or surgeons. So I work very closely with oncology. 

I understand my professional experience is different from my personal experience but it’s tough to park all these years of experience at the door even of a respected colleague. I wish I could and I don’t want to make it even harder for my colleague to treat me, but I just want what’s best for me in my view. 

This is hard on us all. 

Hi Doctorpatient,

I see that this is only your third post to the forum, so I extend a very warm welcome to Cancer Chat. I am not a doctor, but have several doctors in the family and have been on Council of one of the professions allied to medicine myself.

I have had 2 bouts of breast cancer. The first ended in a lumpectomy 8 years ago followed by Tamoxifen. Shortly after this I developed a lump in my second breast, but my surgeon refused to check this out, saying that there was nothing amiss. At this point I claimed that there was no point in treating one breast without investigating the other. I was accused of refusing treatment, which I never did.

Eventually my surgeon and I reached an impasse and I was referred to see another surgeon who took over my care.  He immediately tested the lump in my other breast and fortunately, it was benign. Possibly because of this finding, I had no bother persuading my new surgeon to consider a double mastectomy when I developed a second bout in the original breast a month later. The second time around, 7 years ago, I had a double mastectomy, followed by Letrozole for 6 years. I was fortunate in that my surgeon was happy to remove my left breast prophylactically.  I was under a lot of pressure to have radiotherapy after my lumpectomy, but due to procedural problems, I wasn’t offered this until 11 months after my operation. I was dubious whether it would be of any benefit after this time lapse.

My new surgeon referred me to see two researchers in radiotherapy. Their advice was diametrically opposite.  The first said that it wouldn’t do any harm, whereas the other declared that if it hadn’t been done within 3 months of surgery there was absolutely no point. After I had my double mastectomy, my new surgeon decided that there was no need for me to have radiotherapy or chemo. I changed to Letrozole because Tamoxifen obviously hadn’t been working for me and have taken this for 6 years.

Fortunately, my cancer is a rare one (Mucinous or Colloid Cancer). This is one of the less aggressive forms, but tends to be bunched with some of the more common forms. Despite the fact that I have lost both parents, several family members and close friends to cancer, I had to do a lot of research to find out more about this type of cancer. Like you, this has caused tension with my original care team.

I know just how difficult it was to deal with this and being treated as a psychological case, where I was threatened with being sectioned. This was terrifying and came about as a result of a chance statement.  Fortunately, my husband was at the appointment with me and we were both able to justify the reason for my comments, which were totally different than that understood by my oncologist.

I hope that you can manage to persuade your surgeon to carry out a double mastectomy for you. I certainly felt much more confident after I had mine. I cannot fault my original surgeon. He was a very congenial Irish man, who was always very pleasant, but there are times when you need someone with more experience. I am so glad that I changed my surgeon and managed to restore my faith in the medical profession and, I hope that you can do this too.

Please keep in touch and let us know how you get on. We are always here for you whenever you want to talk.

Kind regards,

Jolamine xx

Hi Doctorpatient

In the legal profession it is a long established maxim that no one should represent him/herself in court, not even a lawyer, because emotional involvement prevents one from seeing all the issues clearly. Lawyers are every bit as logical and pragmatic as doctors, yet they recognise the dangers of being personally involved in a case.

Ask yourself why does the GMC have rules against doctors self-medicating? How many of the hundred or so doctors hauled up in front of the GMC each year for breaking these rules would describe themselves as logical and pragmatic?  I suspect most if not all of them would. 

One of the first things we non-doctors on this forum tell patients is that they must not Google their symptoms, because it dramatically increases stress levels, and the more you're stressed, the less you're able to make rational decisions. I suppose it's really difficult when you don't actually need Google because the information is already in your head, but I respectfully suggest that's exactly what you're doing. You may not need a computer but you're effectively Googling your symptoms instead of putting yourself in the hands of your medical team and trusting their judgement. You may be reading published papers and thinking that you're gleaning solid information from them, but right now can you honestly say that you're not affected by confirmation bias? 

I'm probably the minority voice here (not for the first time), but I suggest you do whatever is necessary to turn off doctor mode and turn on patient mode. Then put yourself in the hands of the surgeon you respect and have whatever treatment she suggests, without second guessing her. 

PRACTICAL ADVICE TO CONSIDER Hello Doc In 2015 I was diagnosed with an aggressive stage 3 tumour which had spread to 10 out of 44 lymph nodes. My first reaction on being told this was that I wanted a double mastectomy immediately rather than just on the affected side. However, my surgeon said he thought that was a bad idea as, if I developed any post op infections on the good side, then this would delay me going on to chemo. So I agreed to have a later second mastecomy and boy, was I glad I did. I was completely unable to lie on the operated side for about 6 weeks. If I had had both done at the same time then I would have spent the 6 weeks post op lying on my back which would have driven me round the bend. Following my second trouble free mastectomy a year later, it was about 5 weeks before I could lay on that side. So, my advice is: consider if you will be comfortable lying on your back for up to 6 weeks if you have both done at the same time - it sounds a little thing but if it is not the norm for you then you might find it a bit unbearable. And the one thing we all need during treatment is comfortable bed and sofa life! I hope your operation and treatment go well and keep your eyes on the light at the end of the treatment tunnel. It is shining brightly and you will get there eventually and pick up your life again. I hope that like me, you will find that life after cancer is so much better than life before! Good luck and Best wishes.

Hi Wils,

We all react differently.

When I had my double mastectomy, I had both sides operated on at the same time. I had no bother sleeping on my side from day one. I invested in 2 heart shaped small pillows which I put under my arms to relieve pressure and these were a great help, although I didn't need them for very long.

Kind regards,

Jolamine xx