Forum Discussion
What Follow-up tests do you get?
I had a mastectomy for primary breast cancer, (Grade 3Her2pos,node neg), then treatment with 6 rounds of Docetaxel and a year of trastuzumab.
My oncologist told me that I have 3wkly regular blood tests while on Docetaxel, and 3monthly regular gated heart tests while on trastuzumab,
But once my year of treatment is over, I will get only an annual mammagram and ultrasound of my remaining breast. No other monitoring tests, unless/until I have symptoms that do not go away that my GP refers me for tests or scans for, eg severe coughs, breathlessness, pain, etc.
I'm told this is because research shows the survival rate is not improved by such tests and that the scans expose you to more radiation so more cancer risk..
I don't feel too happy with this. Is this normal? What ongoing test are/were scheduled for the rest of you with node neg, fastgrowing primary breast cancer?
Or do you only get more monitoring if you are on a clinical trial?
13 Replies
- Not sure where you live but you mentioned Westmead hosp.so thought I'd let you know about my bc support group in the Hills area.We meet on the first Friday of each month from 10am-12 and will be meeting this Friday.You would be most welcome. Tonya xx
My breast surgeon does check each visit, my 20mm tumour was undetected by mammogram and also could not be felt, it was lucky that it was found by ultra sound. My biopsy also failed to detect grade 2 cancer. Yep trust issues big time.
Thanks Summer I certainly will look up this site.
Candice
If you look up www.cancerresearchuk.org you will be able to read lots of research - look for Trials Search Results and you can pick up a range of related subjects. Look at closed trials.
It is my understanding that a scan takes hundreds of x-rays as it goes around so they are in fact more dangerous than ordinary mammograms. The diagnostic mammogram looks for tiny detail.
I hope this gives you a way to do some research for yourself and questions to ask of your specialists.
My GP is impressed that the surgeon will see (and feel !) me every three months for two years then six monthly then annually. He said it means he is interested in his patients.
Regards
Summer
Thank you. All general advice is useful as it gives ladies the chance to do some investigations to empower themselves.
Yes, I had read that Effexor is able to be used and I waited to see if my GP was aware but he backed out. So, I mentioned the name and he just said it is not as effective as theZoloft. Well, he is not taking it and he does not have breast cancer issues !
Had to go back today to see a nurse for a physio refferal. She was sooooo interested in the subject of breast cancer and available resources. I am hoping she will follow this line as she was very pleasant and interested to learn. She will contact BCNA and Westmead for brochures. She had a look at my mastectomy - something the Breast Care Nurse did not even do ! It may well have been the first she has seen.
Regards
Summer
I feel that the annual mammogram and ultrasound, and blood test are not enough, for some it may be, but I would love to have an MRI or some sort of scan. Considedring that the mammogram failed me the first time, it is always in the back of my mind, can they get it wrong again? Have been told it is all not necessary and will not increase chances of survival?
The other strange thing that I don't understand is why they think we are neurotic when we question recurrance. Just wait for symptoms of recurrance if you are worried. No wonder we worry :(
I would also like to know what happens after the 5 year survival, have they done research into this? Why only 5 year survival as a guide.
Candice
I feel that the annual mammogram and ultrasound, and blood test are not enough, for some it may be, but I would love to have an MRI or some sort of scan. Considedring that the mammogram failed me the first time, it is always in the back of my mind, can they get it wrong again? Have been told it is all not necessary and will not increase chances of survival?
The other strange thing that I don't understand is why they think we are neurotic when we question recurrance. Just wait for symptoms of recurrance if you are worried. No wonder we worry :(
I would also like to know what happens after the 5 year survival, have they done research into this? Why only 5 year survival as a guide.
Candice
I feel that the annual mammogram and ultrasound, and blood test are not enough, for some it may be, but I would love to have an MRI or some sort of scan. Considedring that the mammogram failed me the first time, it is always in the back of my mind, can they get it wrong again? Have been told it is all not necessary and will not increase chances of survival?
The other strange thing that I don't understand is why they think we are neurotic when we question recurrance. Just wait for symptoms of recurrance if you are worried. No wonder we worry :(
I would also like to know what happens after the 5 year survival, have they done research into this? Why only 5 year survival as a guide.
Candice
- My GP is very thorough and liaises with my specialists when needed.Actually cancer or not,I think everyone over 50yrs should have a 1-2 yr blood check- especially for cholesterol and blood sugar.One of my liver enzymes was raised which prompted my GP to send me for an abdo ultrasound which showed I had a fatty liver- I would not have known otherwise.I think it's better to catch problems early and then you can do something about it. All doctors have their own ideas.My oncologist is abit the other way- don't go looking for trouble or have scans etc because he thinks it causes unnecessary anxiety.That's ok - he's very good but I'm the one who's had cancer twice so I'm bound to be anxious either way.It's so good to have this network where we can share info and experiences.This empowers us and we are more informed to fire questions at our doctors. Tonya xx
- My GP is very thorough and liaises with my specialists when needed.Actually cancer or not,I think everyone over 50yrs should have a 1-2 yr blood check- especially for cholesterol and blood sugar.One of my liver enzymes was raised which prompted my GP to send me for an abdo ultrasound which showed I had a fatty liver- I would not have known otherwise.I think it's better to catch problems early and then you can do something about it. All doctors have their own ideas.My oncologist is abit the other way- don't go looking for trouble or have scans etc because he thinks it causes unnecessary anxiety.That's ok - he's very good but I'm the one who's had cancer twice so I'm bound to be anxious either way.It's so good to have this network where we can share info and experiences.This empowers us and we are more informed to fire questions at our doctors. Tonya xx
Thank you for your reply to the query re follow-up tests. I am sure many BC ladies will be watching for some answers or information. We all appreciate your input as it gives us questions to ask.
From what my husband and I have read on this website, the liver function test is not the best marker as it does not really show the 'fatty liver' issue.
From my GP visit today I think that we BC ladies all need to rely more on the oncologists who (in the GP's words) "are the specialists". I asked about anti-depressants (which my GP prescribed me in January) and his comment was "let's wait and see what the oncologist says". My anti-depressant is apparently NOT good when on Tamoxifen which will probably be prescribed.
There seems to be a lack of basic information between the parties - my GP did not even know the term 'cording' when I asked for a physio refferal. Mind you, the local physio (in a rural area) had no idea what that was anyway !!
We are all 'in the dark' and it is only the experiences of others whcih helps along the way.
Have a good day.
Summer
