You have to trust  your surgeon  and your cancer is different  to mine glad you still have a sense of humour it's good to keep laughing  good luck  with your  life. Don't  forget 70 year olds is the new  50's xx

Hello,

You have done remarkedly well in fighting and beating this cancer.

Decide what is best for you?. you might have many years and i hope that you do.

Its a good question IS IT WORTH IT?

If the treatment is easily tolerated then keep going and going until it runs out whenever that maybe?

Then maybe it would be the time for you and your Body to go in peace. Let your Doctors do all they can for you and you have then done it all and hopefully in years time. xx

Hello Sheltie_Lady, I just wanted to let you know about my mother's experiences so far. My mother is 77 years old and had a double mastectomy and lymph node clearance and dissection  (Left side - Stage 3, 33mm, grade 2 - lymph involvement; Right side - Stage 0/1 - with evidence of minimal lymph involvement) almost 1 month ago. She is recovering well and she will have her first appointment with an Oncologist in 2 weeks time. The surgical consultant told her that it is not certain that she will be offered chemotherapy and that further tissue analysis is being done. She is ER + and PR + (HER2 status uknown at present). My mother currently experiences arthritis but is otherwise in good health and does not take any medication.

My mother would prefer not to have chemotherapy, however I think if the results indicate at least a 5% additional benefit at 10 year survival she would go for it. It's certainly a scary thought for us both, but having read some papers, if an older person is in relatively good health then chemotherapy is recommended to improve longevity and in the past, as a group, they were underprescribed chemotherapy because doctors were overly cautious. It is difficult to know exactly how each of us will respond to chemotherapy. Some people have an easier ride than others, but I know my mother wants to live as long as possible so long as she is in good health. If chemotherapy alone offered a <5% increase in survival at 10 years, I don't think she would choose to go through it as it wouldn't provide much benefit. She would just remain on hormone therapy. I hope your next appointment with your oncologist goes well. I will update on what recommendations are given to my mother in 2 weeks time.

Can I ask - were you told exactly how many lymph nodes the cancer had spread to? The Predict Tool requires this and we have not been told yet... 

Hi,

I'm sorry I haven't replied to this before now, but I didn't get an email telling me you had replied to my quest for information. I was told that one of the two sentinel nodes taken for biopsy contained cancer cells.  However, on the morning of my surgery for lymph node clearance I overheard my surgeon say that he had been sure he felt something in my sentinel node but when it was sent away they couldn't find it.  This has made me think that the pathology report was negative and I didn't really need that second operation, which has been harder to get over than the mastectomy.  The feeling was even stronger when the lymph nodes taken during the second operation turned out to be clear of cancer.

I haven't been given an appointment yet to see the oncologist, which I don't really mind, as it is giving me a bit of respite from thinking about making my decision. 

I am veering towards starting the hormone treatment but if I get side effects that make me feel miserable, will stop taking them. This is because my children say they will support me if I decide not to take them, but they don't want me to refuse treatment, really.

I am surprised you weren't told how many lymph nodes were affected. This is something to ask at the oncologist meeting.  My surgeon said he did not recommend chemo for me because the side effects could be harmful. (Obviously he knew at the time the lymph nodes were negative)

I have a whole list of questions when I do see my oncologist, and my children are coming to the meeting with me to make sure we get answers.

Christine 

Hi,

Sorry I didn't reply sooner, I was waiting to get an email telling me someone had replied, but it didn't come. 

Thank you for your advice, I have no problem with letting my body go in peace when the time comes, I just want the time until then not to be made miserable by taking medication if, by not taking it, the journey is maybe a little shorter but a lot easier.

Christine xx

Hello, I don't get updates about replies either...Thanks for telling me more about your experiences. Today my mother met with an oncologist. We learnt that the cancer in her left breast was 7cm in size :shocked: and that it was invasive lobular cancer. We were also told that 21 lymph nodes (left side) were removed and that out of these 2 showed signs of cancer with one that was very enlarged. I understand you must feel frustrated with the uncertainty of whether you needed a lymph node clearance - I feel put out that 19 additional nodes were removed from under mum's arm... but perhaps it was difficult for them to know which one's to take.

Mum was told that there is a small-medium chance that chemo might be helpful (She is ER + PR + and HER2 -ve). She was asked if she would consent to have genetic (oncotype) testing where some of her tissue will be sent to America to check if there is a high risk of cancer recurrence. This will help guide the decision about whether chemo is going to be helpful... If it is low risk, then it's likely my mother will just have radiotherapy on her left supraclavicular lymph nodes and Femara for 5 years. Mum is due to hear back about the test results in two weeks time.

Hi Marjan,

The Oncotype test tells how fast the tumour was growing and how it might or might not respond to chemo, and it seems to that we should all have it done, but I wasn't offered it.  I intend to ask about that.

i am still waiting to hear about an appointment with the oncologist. I am going to ring the nurses today to chase it up. My son and daughter want to come with me so I need to be able to give them some notice as my son lives hundreds of miles away.

How has your mum felt after the lymph node clearance?  I have found it harder than the mastectomy and I didn't have anywhere near as many removed, and I have developed cording which is really painful when I do the exercises. 

How does she feel about the radiotherapy and anti- Oestrogen tablets?   Would she continue to take them if they cause her to feel unwell? Apparently a lot of women stop taking them after a short time. 

I read yesterday about a woman who refused all further treatment after her surgery who is doing well six years later. The only thing about the story that makes it not an example to follow, is she says she has injections of mistletoe that are keeping the cancer at bay.  That sounds like a Christmas fairy tale to me.

My cancer was the same kind as your mother's but smaller. The nodules in the other breast were diagnosed as fat necrosis and although I asked for a double mastectomy this was refused. Only Six lymph nodes were taken and they were clear which probably accounts for me not being offered the oncotype test etc.

I have so many questions to ask the oncologist - mainly about my tumour, how fast was it growing, can they tell how fast it was growing without the oncotype test, and how soon would it be expected to return with and without further treatment.  

I do hope your mother has a low score on the oncotype.  I wish her all the best.

Christine

Hi Christine,

I have looked into the Oncotype test further and it appears to be given as part of a trial.

The study title is "A prospective clinical utility and economic impact study of the Oncotype DX Recurrence Score in node-positive patients in the UK"; Chief Investigator: Mr Simon D H Holt from Prince Philip Hospital (Consultant Surgical Oncologist). 

My mother was tired and feeling poorly in the week following the double mastectomy and there was some swelling 2 weeks later on the left hand side, but that went down very quickly. She feels much better now thankfully. She has not experienced cording and tries to do different exercises daily (although I think she might have her own routine going on rather than all the ones the hospital recommends). She also is very health conscious around food supplements and since being diagnosed she takes black seed oil and manuka honey daily and zinc, calcium and Vitamin B supplements. I'm not sure if any of these help or are placebos but she is doing relatively well. The mistletoe injectionss do sound like a Christmas fairytale... I honestly don't know how much that might have helped.

Mum feels very nervous about the potential of having chemotherapy. We were told that if it were the case that she had to have it, it might be for 4 rather than 6 cycles. Honestly, she doesn't want to do it, but if it turns out there is a large enough benefit to having it then I think she will. Mum is okay to take the hormone tablets, but feels a little worried about having radiotherapy, especially since it will be close to her heart, but she has been told that there are ways to help limit risks of damage. Mum already experiences aches and pains so I'm not sure if taking the hormone tablets would exacerbate this or it would result in more of the same. I think if it was a horrendous experience, she would seek medical advice and weigh up whether it was right for her to continue.

Thank you so much for your kind wishes for my mother and I too hope her score will be low. I was surprised that her 7cm tumour only had 2 lymph nodes involved! I don't know what exactly to read from this however.

I hope you will be able to arrange an appointment quickly with your oncologist and have the opportunity to ask the questions you would like answered. I think the Oncotype test has been used in the NHS previously, but only with node negative patients, so perhaps it might be an option for you.

Marjan

Hi,

Thank you for the information about the Onco test, you might just have saved me from making a fool of myself in the oncologist's office.

I phoned the Breast nurses today to ask about my appointment and there is nothing on the system. The nurse I spoke to called the oncologist's secretary and alerted her to the fact I had been waiting to hear for two weeks. She is hopeful that I should hear by Monday or Tuesday and if not, I have to call her again to chase it up.

Waiting for information and having to make decisions is the worst thing about this cancer thing.  Never mind what it does to the body, it does your head in!!!

Fingers crossed your mum won't need chemo.

Cxx