Hi Radley,

After I had my lumpectomy, I was told that I had mucinous cancer, which, if you have to have cancer, is one of the best sorts to have, as it is not very aggressive. I started taking Tamoxifen. When my pathology result came back from my lumpectomy, it said that there was insufficient margin removed, but my surgeon advised me that he had been aware of this at the time and, had removed an additional margin, so there was no need to worry about that.

Shortly after this, I discovered a lump in my other breast, which was larger than my original lump. My surgeon kept ignoring this and, wouldn't scan it, yet he wanted me to have radiotherapy. I refused to have one breast treated whilst he was ignoring the other and, we had a Mexican stand off for several months. He eventually realised that we were getting nowhere and referred me to the surgeon, who was in charge of all the other surgeons in the area. He dressed me down for 1½ hours in a freezing cold lecture theatre, telling me that they couldn't have patients dictating what treatment they had.

I pointed out to him that I was not demanding treatment, but diagnosis and, I was under the impression that I had been sent to see him for a second opinion. He seemed much more at ease with this, took me to a consulting room and, immediately found the lump. He sent me for a mammogram, ultrasound and biopsy straight away. Fortunately, this lump turned out to be benign, but was fairly large.

When the other lump reappeared in the original breast, I was advised that I would need a mastectomy and, my surgeon and I discussed the possibility of having a preventative double mastectomy, because he believed that my benign lump might change over the years. I then started taking Letrozole for 6 years and, finished taking this in July 2017.

I have never regretted having this done, because I feel as if I took awway as much 'nasty' tissue as possible. I also went to see two eminent researchers in radiotherapy at this time. The first advised that it was still worth a try, whilst the other was quite certain that if I hadn't had it within 3 months of my original surgery, it was a waste of time. I felt that this gentleman seemed the more knowledgeable of the two and took his advice.

I had a routine mammogram not long before I first attended the breast clinic. This didn't show up anything untoward, but I later discovered that mucinous cancer doesn't always show up on mammogram or ultrasound. Perhaps this was the same with your DCIS and why it only showed up in your pathology sample?

You can get the Silicone prosthesis from the NHS, but have to buy all other types. Marks and Spencer's foam  forms are lighter and denser than the other type of foam forms you can buy. I have a great wee  polystyrene bead type prosthesis, which I bought many years ago. I have tried to replace this over the past few years, but haven't been able to get anything like it. The ones I have ordered have been much bigger beads and not had any shape to them, so I have returned them.

The M & S ones are the cheapest, as they are sold in pairs. This suits me, as I have to pay double for all the other ones, which are sold separately. Silicone are the more expensive, then foam and then polystyrene beads.

I was initially told by the nurse who was fitting my first prosthesis that it needed to be the same size as my original breast. I had large breasts and , they certainly didn't need to be anywhere near that weight. The Silicone prostheses have been gradually getting lighter over the years, but are still not light enough for my liking. The weight can put additional strain on your back and shoulders.

Do you have a date for your mastectomy yet? You should be given a softie to pop in your bra for the first while. After that, the hospital should arrange for you to get a Silicone prosthesis. Ask your breast care nurse about the supply of these.

Hope this helps,

Jolamine xx

Hi Oaktree

Just wondering how you’re getting on?

Sheila

Hi Jolamine,

Very sorry to know about your ordeal to get a proper diagnosis!

In my case it was not bad at all- i was sent for a Mammogram by the ENT Surgeon as a CT scan of chest showed a lump in the neck (originally referred to the Respiratory Clinic for shortness of breath which was found to be due to a rt sided vocal cord palsy) Mammogram showed a small lump 10mm-a biopsy was done at the same time which showed Mucinous carcinoma.

I had a lumpectamy within 2weeks and histology showed extensive DCIS of 60mm.Breast care team were as shocked as I was too.After the histology I was sent for an MRI to check the other side-but I was told it was ok- I am going to have the Mastectamy on the 24th-it all happened within the last 3 months-so in a way I am lucky I guess if what i have been told is true

I am not sure as before the lumpectomy I was told it is just a very small lesion which can be excised and perhaps will only need radiotherapy afterwards.

Now I am  told  I will need further treatment depending on how widespread the DCIS is on the histology after the surgery.

 So I am getting panicky-but cant talk to my family as it will upset them.My son -his wife and little one yr old daughter who I was looking after live with me. I feel bad that I will not be able to do much for her from next week as both the parents are working.

The Nurse did tell me about the softie they will give me as well as the silicon one-I had a feel of it but not sure i noticed the heaviness-My mind was blank at that time.

Your experience and your advice keeps me going and thank you so much for it.

Regards

Radley.

Hi Radley,

I am not surprised that both  you and your care team were shocked to discover such extensive DCIS after your lumpectomy. However, I'm glad that you are all set for your mastectomy on 24th.

Sometimes the pathology results after surgery can show up additiional problems, which can change the whole course of your proposed treatment.

It must be incredibly difficult for you not to share your feelings about all that is happening with your son and daughter-in-law.  The advice usually given is to share everything with your family and to discuss things openly with them. This reduces stress for both of you and, will help both of you through your cancer journey.

How lovely to have a one year old granddaughter. My two are now 7 and 9 and live a long distance away from me. I wish that they were closer. They grow up so quickly too, so make the most of her at this stage.

I shall be thinking of you on 24th and hoping and praying that all goes well.

Kind regards,

Jolamine xx

Thank you Jolamine for your concern and support

Regards

Radley

After the mastectomy and sentinel node thing last week I returned to the hospital yesterday for removal of the dressing and pathology results. All good. No further treatment required!

Sheila xx

Hi Sheila,

I am absolutely delighted to hear that your pathology results were clear.

Kind regards,

Jolamine xx

Hi Sheila,

Absolutely delighted for you! Hope you celebrated the good news.

I had a lengthy consultation with a plastic surgeon this week and he is confident a lumpectomy is the way to go! I was completely taken aback by this as I thought it was off the table! Just waiting on a call now.

Oaktree x

That’s great! Hopefully it’ll be soon and you won’t be anxious about it for long. 

Thanks to everyone for your good wishes.

Sheila xx