The three most important things in choosing your medical consultant/specialist are:
Going to see a doctor, especially a specialist can be scary and stressful. I have insider knowledge of some specialists that you do not have, so I had a slight advantage when I came to choose my specialist. Even so it was still stressful for me and would probably be more so for you. So, I have written this blog in an attempt to make the process easier for you.
This whole process is based on trust, trust that you have in your GP, trust that your GP has in the specialist and trust that you have in your specialist for however long you have a therapeutic relationship with them.
1. Recommendation from your GP
Firstly, you have to see your GP, so she or he can make a diagnosis and be able to refer you to a specialist for this condition. When you talk to them, ask them about their recommendation of 2-3 specialists. Because you trust your GP, you will automatically trust these specialists slightly more than those your GP does not mention.
Do not be satisfied with only one recommendation, as you might find later on, that this specialist is not be the right choice for you. They may not see patients with your condition or they may not be the best fit for you. Do not rush this process and choose a specialist because they can see you in the shortest time possible. Most specialists can and will see patients urgently for conditions like cancer if your GP or yourself call their office and talk to their PA or nurse.
2. Subspecialty training in the condition that you have
After you have received a list of specialists, go and search for more information about them. Many specialist have websites and even if they don't you can still find something out about them through googling them e.g. information from a hospital (where they may work) website. Many of these sites will indicate what training your specialist has had and if they have had any sub or super specialist training. If they have, they would have performed many of the procedure you might require, multiple studies show that people who have subspecialty training and have performed more than a certain number of procedures have fewer complications than those who have not.
If they have their own website you should also look to see whether they report which procedures they undertake. For example, sometimes I am referred patients for consideration of breast reduction. I do not do this procedure so your time would be wasted if those referred came to see me for this procedure.
For some common conditions, there is no need for subspecialty training because all of the specialists in that field will be equally trained and subspecialty training will not matter. For general surgery examples of these conditions are hernias and gallstones.
3. Is this specialist a right fit for you
Investigate further all of the specialists on your list that have had subspecialty training that you require. Look at their website and throughout the internet for further information that may be important for you:`
More information you find about your specialist, the more you will perceive that you know them. And this will lead you to the conclusion that you may trust one specialist more than others. And trust is the most crucial thing in any doctor-patient relationship.
Recommendation from your GP, subspecialty training for your condition and the right fit for you are in my opinion 3 most important tips in choosing your specialist. Also always remember that you should never be pressured by a specialist into having surgery, especially if it is going to cost you a lot of money. And you can always ask for the second opinion.
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I am often asked in the breast cancer clinic by my patients: "Should I have genetic testing for Breast Cancer? or What is the risk of breast cancer for my daughters?"
My usual answer was that the breast cancer is common, around 1 in 9 women will develop breast cancer during her lifetime. Let's talk about your family history. Do you have any family history of breast cancer? If yes, then I used to ask which family members and their age. Any family history of Ovarian or prostate cancer? Who and what age? I would then refer women to genetic services if family history or young age suggested that there may be an increased risk.
But now The American Society of Breast Surgeons has updated its guidelines for genetic testing. This guideline recommends that all women with newly diagnosed breast cancer are tested for BRCA1, BRCA2 and and PALB2 mutations (and other genes as appropriate based on clinical scenario and family history).
What does this mean and should we in New Zealand also change the genetic testing guideline?
Approximately 10% or all cancers are due to inherited genetic mutations. This number is likely to be underestimate and if we tested all newly diagnosed women, we may find that this risk increases or decreases. We definitely do not know the risk in New Zealand, especially in minority populations.
BRCA1 and BRCA2 mutations are most common mutations that are associated with increased risk of developing breast cancer. There are also other genes that increase the risk like PALB2, CHEK2, PTEN, ATM, TP53, CDH1, NBN, NF1, STK11 etc, but the risk in these mutations is not as high as in BRCA mutations.
In the first instance we have to talk to patients whether they want genetic testing and what impact the results of testing may have on them or their offspring and relatives. Patients need to be told what the possible outcomes of the genetic testing is and what does that mean for them.
Results that are positive - will need management recommendations plan for that mutation. This may involve plan from different surveillance tests for different conditions within that genetic syndrome, possible chemoprevention (if exists) and risk reducing surgery. You can find more on the NCCN guidelines on Detection, Prevention and Risk Reduction.
Variants of unknown significance (VUS) result - this means that the test is inconclusive. Test has discovered a mutation within the gene, but at this stage we do not know whether this mutation is carries an increased risk of developing a cancer. With time we will know more whether this mutation carries increased risk, but often this takes anywhere between 5-10years (commonly) or even longer.
Negative results but family history suggests possibility of genetic predisposition - we should follow these patients according to their risk, rather than the presence of negative test. This may mean that these patients have a genetic predisposition in a gene that so far is not know to have association with increased risk of breast cancer.
Negative results and family history does not suggests possibility of genetic predisposition - these patients have the same risk as normal population (1 in 9 women).
What is the cost of genetic testing in New Zealand vs USA?
Genetic testing depends on the type that you need to be performed. In NZ it's hard to get figures for this, but it's likely to be around $1500.00 to $2500.00 dollars per person.
It's hard to estimate or get the cost of breast cancer per person, especially in the public sector. In private it costs between $15,000 - to $25,000 just for surgery (and this is not including reconstruction). And then there are possible radiation therapy costs, chemotherapy costs, follow-up costs, any possible complication costs etc. What about other costs to a person going through this treatment - impact on family, time of work, psychosocial impact of breast cancer etc. The cost is impossible to calculate. Because it is difficult to calculate the cost, it's hard to calculate the cost of benefit (all the tests that are performed, all the stress that these people have every time they come for a clinic appointment, cost of risk reducing surgery etc). At this stage, private insurance companies will not pay for genetic testing either, this has to funded by a patient.
Should we update the guidelines? It's hard to say at the moment.
It would be great to have genetic information of all cases of breast cancer, especially in rates of mutations in minority groups. Without these it is impossible to say Yes or No. What is the impact of genetic testing on these people? What is the long-term cost to their family - like private insurance costs as well as the stress of knowing that you have a mutation and stress of knowing that you do not have mutation when your siblings or other relatives do?
My recommendations are that you talk to your specialist with regards to the risk. And if you are not able to have publicly funded test, and you wish to have one and pay for it, then just talk to your specialist to refer you to the genetic services to request genetic testing.
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I have often been asked by patients if they are a candidate for breast conservation surgery or should they have a mastectomy. So is there a right answer?
Both you as a patient and your surgeon have a say in this decision, but ultimately the choice is yours.
The breast surgeon will decide whether it is possible to perform the breast conserving surgery or if the mastectomy is required. How do we as surgeons do this?
This decision will depend on the amount of breast tissue that will need to be removed and in which part of the breast the cancer is vs the amount of breast tissue (size of the breast) that the woman has.
When we are talking about the outside half of the breast (towards the armpit), we can remove up to 20% of breast tissue. In the middle half of the breast, you can only remove 15% of the whole breast tissue. This is, so we prevent deformity of the breast following surgery and likely radiation afterwards.
As surgeons, we aim to remove cancer or the calcifications (usually DCIS) and 1 cm of normal breast tissue around a tumour. So if a tumour is 1 cm in diameter, approximately 3 cm in diameter of breast tissue will be removed. If a tumour is 3 cm in diameter, then 5 cm in diameter of breast tissue will be removed.
After the cancer is removed, the breast tissue around the cavity is moved to fill in the cavity. If tissue from a different part of the body is used - this is called a flap.
So please talk to your surgeon whether or not she or he is able to perform breast conserving surgery.
Your surgeon will let you know if she or he can technically perform breast conserving surgery. If this is possible, then it's your decision whether or not you would like to have breast conserving surgery.
The risk of cancer coming back over time in the same breast is similar whether you have a mastectomy (removal of the whole breast) or breast conserving surgery followed by radiation. The risks associated with mastectomy and breast conserving surgery are similar (apart from the risk of positive margins) and not very high at all. But do discuss these risks with your surgeon, as these do differ between different surgeons. If you do have breast reconstruction at the same time as mastectomy, then the surgical risks are much higher.
In women with low risk of breast cancer (general population), there is no need to remove other breast to prevent cancer on that side. The risk of cancer in the other breast causing risks to your life is less than 1%. The risks of surgery are higher.
You and your surgeon need to have a discussion whether the breast conserving surgery is technically possible. Risks of both surgeries, as well as recurrence, need to discuss so you can make an informed decision with regards to the operation. In the end, it's your decision which surgery you will have.
Please do not rush with this decision, take your time. Short delays do not have any impact on your survival, but making a decision that you are not happy with will have an impact on you forever.
I am Breast, Endocrine and General Surgeon.
Wakefield Specialist Medical Centre
99 Rintoul St, Newtown
Waikanae Specialist Centre
Boulcott Specialist Centre
666 High Street, Boulcott