Hi Connie,

A very warm welcome to Cancer Chat on your first visit to the forum.

I am sorry to hear about your diagnosis and to discover that your diagnosis and treatment has not been plain sailing. I have had two bouts of breast cancer. The first was 7½ years ago and the second was 6½ years ago. The first time I had a lumpectomy, but the second time I had a double mastectomy.

I also have a family history of cancer. I lost both parents to it, but cannot go back to previous generations, because my mother was adopted. Her mother died shortly after she was born, whether due to childbirth issues or cancer, we’re not sure. My cancer is mucinous, a rare type of cancer, which only 1% of people seem to get. Because it is not a very aggressive form, the medical profession do not seem to worry about it too much and, just tend to treat it in line with some of the more common forms. I have always attended for routine mammograms, but nothing showed up. I discovered both lumps myself when I was in the bath.

The first time I went for surgery I had a lumpectomy and 6 lymph nodes removed, but all were clear. The second time I had a double mastectomy. The surgeon tried to take a few nodes from my other armpit, but in the event, he only removed fatty tissue. He was reluctant to remove too much tissue in case it led to lymphoedema. Sadly, I later developed lymphoedema in both arms despite this caution.

I did not have chemo or radiation due to administrative errors – but that’s a long story. The first time I took Tamoxifen for a year and the second I changed over to Letrozole, which I took for 6 years. I just finished taking this last July. I didn’t worry about reconstruction, as this was out of the question , due to previous surgery for other medical conditions. Are you still hoping to have both implants, or have you given up on this idea? If you do have to give up on this at any time, I am only too happy to tell you my experience, as life really is possible with a selection of prostheses for different occasions.

I have developed Diabetes since I started on my cancer journey and developed a lot of side-effects to medication, for example, musculo-skeletal problems and neurological upsets to name but 2. It can sometimes be difficult to get some of your care team to actually listen to what you are saying and to pay attention to what is actually worrying you. Do you attend your appointments on your own? I always take my hubby with me and, between appointments, we draw up a list of questions which we want to speak to the consultant about. Whilst I am asking these questions, my hubby writes down the answers. Many of us do this, as it is so easy to forget pertinent questions during your consultation. We also only retain a small percentage of the conversation during our appointments, so this is much easier to cope with. It also means that if I highlight a problem that I am worried about and it is ignored, my hubby can highlight that I am having real concerns about that particular problem and it is sometimes then given the priority it merits.

Failing this you could always ask to have a quiet word with your breast care nurse who would be duty bound to bring this before your consultant. The other option might be to ask your GP if he can do anything to help with the odour. You could also ask him what his opinion is of the nodes that you are worried about. If he feels that there is a problem, then he would refer you back to the clinic for further investigation.

I do hope that you get somewhere with this soon. Don’t delay in contacting someone about this. It is your body and nobody knows it better than you, so if you feel that something is wrong, chances are that you are right. Sometimes we just have to stick our necks out to ensure that we are heard.

If you still feel that you are getting nowhere, then you still have your private insurance to fall back on.

Please stay 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

Thank you so much Jolamine for your answers and just listening too me.  Yes my husband goes with me to all my appointments and yes we do right down things.  My memory is not very good.  Due to the cancer the medications the infections and many surgeries I have developed Parkinson’s plus syndrome.  They feel I would have developed anyway maybe 15 to 20 years down the road instead of now.  I am 52 years old and hopefully with the medication it will slow things down.  I have an excellent Neurological team.  Connie

Hi Connie,

I am so glad to hear that you hubby accompanies you to all of your appointments. I know that my memory and concentration have been badly affected by the medication that I’ve been taking, so I find it very helpful to have someone with me.

How are you coping with the Parkinson’s? Between this and your hysterectomy, you have had a pretty rough ride. People don’t always appreciate the other problems that appear along with the cancer. I sincerely hope that the medication slows things down for you.

You are fortunate to have a good neurological team, as this can be difficult to find. I hope that you manage to get the problem with your lymph nodes sorted and can then move on for another while.

Stay strong,

Jolamine xx

Hi ConnieRC,

I hope you don't mind me reaching out to you .. I have also been diagnosed with the TP53 mutation. 
This came about when I was diagnosed with stage 2 inflammatory breast cancer. I was genetically tested as there was no family history of cancer in my family and I was 29 at the time of diagnoses. 
 

I think we all expected the BRCA result, but turns out I had the TP53 Mutation. I am also HER2+ and de nova. My professor said in all her medical experience she has only ever seen one other woman with this combination. 
 

I just wanted to see how you are getting on? Please feel free to send me a message whenever :). One of the nurses spotted my original post about radiotherapy and put me through to your post :) 

take care of yourself.

Jodie xx