"Ask Me Anything" with Dr. Susan Love... - SHARE Breast Canc...

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"Ask Me Anything" with Dr. Susan Love. Join Now!

SBlau profile image

Ask a breast cancer expert anything! Post your questions here to have them answered by Dr. Susan Love of the Dr. Susan Love Research Institute.

All questions that you have for Dr. Love should be posted as a reply to this original post. Any questions that are posted as their own thread will not be included as a part of the AMA.

At 8pm, at the end of the AMA, we will lock the thread, so that no more questions can be posted in the thread.

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Post your questions for Dr. Love as a reply to this post!

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48 Replies

Hi happy to be here! Ask me anything.....

Thanks Dr. Love! Here's a question that was submitted by a user on HealthUnlocked: The advice on nutrition and supplementation during breast cancer treatment and afterwards can be so conflicting and confusing. What’s Dr. Love’s definitive list of do’s and dont’s for us?

DrSusanLove profile image
DrSusanLove in reply to SBlau

Basically it is pretty straight forward...a healthy diet high in fruits and vegetables and low in animal fat, regular exercise, and stress reduction (meditation). There is no real magic

I'm honored to have your ear, Dr. Love! Please explain your thoughts about copper. I stopped a joint medication due to its 250% RDA of copper, then stopped my multi-vitamin, though it offered only about 35% of the RDA, but now I hear that the multi has been found to possibly reduce peripheral neuropathy. Should copper supplements and foods be avoided? Thanks!

Although there is a study looking at it, there is no hard data yet! It is not clear whether dietary copper is the issue or how metabolizes it. I would wait for more data before I got too carried away.

Can you share some information about your collateral damage research?

DrSusanLove profile image
DrSusanLove in reply to TNBC16

As you probably know I had leukemia five years ago and it taught me an important lesson. There is a big difference between side effects (transient) and collateral damage (permanent)! We used free text to collect what was actually bothering women living with mets. One surprise to the docs was that the people living with bone mets had the biggest effect on their QOL. We are now working on extending this work to recommendations on how to address these issues.

If tamoxifen is contraindicated for chemoprevention, is raloxifine a good substitute?

Tamoxifen is not contraindicated for chemoprevention; in fact it works quite well in a large randomized controlled study. Raloxifene also works. They both block estrogen in the breast and not in all of the other organs.

Another questions submitted by a HealthUnlocked member: Will 10 year anti-hormonal therapy become a standard practice in the near future?

DrSusanLove profile image
DrSusanLove in reply to SBlau

Although the studies show that 10 years is better then 5 it is not but a large amount. Whether a women continues beyond 5 years depends on her situation ie her tumor and how well she is tolerating the drugs.

What is your though on mammograms at age 40?

DrSusanLove profile image
DrSusanLove in reply to thill2

If you are at high risk and your breasts are not dense then mammograms at age 40 are fine but in general mammography works best postmenopausally when the breast is less dense.

thill2 profile image
thill2 in reply to DrSusanLove

When you have dense breast what do you recommend the best tool to find breast cancer early?

DrSusanLove profile image
DrSusanLove in reply to thill2

3 D whole breast ultrasound is good such as Sonocine for those that are not at high risk . For women who are BRCA carriers MRI is recommended.

SBlau profile image
SBlau in reply to DrSusanLove

For women who have to get MRIs fro breast cancer screening, are there any side effects or long term complications of contrast solutions, or other issues with complications from MRIs?

DrSusanLove profile image
DrSusanLove in reply to SBlau

The main complication is that it is too sensitive so you get many too many benign biopsies. Really the answer has to be figuring out how to prevent breast cancer rather than find it just as we would rather prevent terrorism rather than screen with the TSA!

You find too many people with big bottles of shampoo!

Dr. Love, What do you think has been the biggest breakthrough in breast cancer treatment or research recently?

DrSusanLove profile image
DrSusanLove in reply to SBlau

Immunotherapy and figuring out ways to direct your own immune cells to fight your own cancer! While not used yet in breast cancer we are exploring ways we might be able to do that.

bbee13 profile image
bbee13 in reply to DrSusanLove

why do you think immunotherapy hasn't made its way to breast cancer research yet?

DrSusanLove profile image
DrSusanLove in reply to bbee13

It is only now being used for B cell leukemia which is an immune cell cancer. The problem with breast is getting the right antigen. They tried CAR T cells against Her 2 in a woman with metastatic breast cancer not realizing that the lung normally has Her 2 and she had a very bad reaction and died. More work needs to be done to figure out how to do this in solid (non blood cancers).

For women diagnosed with DCIS, what are your thoughts about watchful waiting instead of surgery +radiation?

It depends on the DCIS, but I think watchful waiting is not crazy. At this point I would do it as part of a study like the COMET study so that you can be appropriately monitored and we can all learn!

SBlau profile image
SBlau in reply to DrSusanLove

The Comet Study looks at the risks and benefits of active surveillance compared to guideline concordant care for low risk DCIS. Here is their website if you are interested in finding out more: dcisoptions.org/comet

What are the latest developments in treating DCIS?

DCIS is when there are breast cancer cells contained in one milk duct. Unfortunately (don't get me started) we don't have a map of the anatomy of the ducts in a woman's breast (something we are working on). If we did we would know exactly where to remove the involved tissue or maybe even be able to squirt something down the duct (draino????) to clean it out. This is an area we are working on at the Dr Susan Love REsearch Foundation.

im interested in a clinical trial, but i feel very overwhelmed by clinicaltrials.gov and i find it hard to pick one that suits me. any advice on how to embark on that journey?

DrSusanLove profile image
DrSusanLove in reply to bbee13

breastcancertrials.org has an app that is very good. On Share's website Emerging Med has clinical trial navigators that are very good.

SBlau profile image
SBlau in reply to DrSusanLove

Here is the link to the resources on SHARE's website for finding clinical trials. sharecancersupport.org/brea...

Dr. Love,

I've been on AIs for almost a year ( first anastrozole, then switched to letrozole) but my wrists and hands are very painful, weak and stiff. I also have developed a stiff ankle and knee. I've tried physical therapy and thumb spica braces with no discernable improvement. Will these terrible drug side-effects go away if I stop taking an AI, or have I been permanently damaged with arthritis or arthritis-like conditions?

It is not permanent! You should discuss with your doctor the benefit you are getting from the AI and decide if it is worth it for you. Exercise does help and obvious should be more gentle ie swimming or yoga.

What is lobular breast cancer and how is it treated? Same treatment as other types or different?

DrSusanLove profile image
DrSusanLove in reply to TNBC16

The lobules are at the ends of the ducts and are the part that makes milk when you are lactating. When cancer starts in a lobule it is almost always hormone positive and Her 2 negative. They are very sensitive to estrogen blockers. The more complicated issue is that they don't cause a lot of reaction around them and so are not easily diagnosed as a lump or lesion on a mammogram. Sneaky! That means they can be harder to remove completely with a lumpectomy.

Does LCIS increase chance of lobular BC or ductal cancer as well?

both! Although you would think it would be lobular, it actually is both and both breasts. It is not like DCIS which can turn into invasive but rather a marker of risk more like dense breast tissue, which means you should be watched more carefully!

Despite warnings of what we should do to avoid lymphedema, a study being publicized in the past few days is telling us that avoiding these time-honored behaviors (avoid, blood pressure and blood draws in affected arm, wearing compression when we fly, etc.) hasn't proven to help us much at all. Any thoughts on avoiding lymphedema? And paying attention to these studies?

Indeed all those prescriptions on what you could or couldn't do re preventing lymphedema were never based on data but rather doctors sitting around trying to come up with something. Swelling has more to do with how many lymph nodes you have and how many are removed. Now with sentinel node removal we are not causing the same blockages and the warnings are even more irrelevant.

What type of follow up would you recommend for those with double mastectomy?

What about after 10 years any?

DrSusanLove profile image
DrSusanLove in reply to thill2

Imaging doesn't work when there are no breasts. The problem is that when you do a mastectomy you rarely are actually able to be sure you have removed all the tissue. (That is actually why lumpectomy and radiation is more aggressive than mastectomy, you can radiate a larger area than you can cut out). That being said paying attention to any changes in the scar or skin is important.

thill2 profile image
thill2 in reply to DrSusanLove

Would ultrasound or bone scan be beneficial?

DrSusanLove profile image
DrSusanLove in reply to thill2

For the chest wall? Not really. When breast cancer recurs it is usually as a lump in the scar or skin. Bone scan shows when there are metastasis in the bone. We don't have the magic test!

You once said that some women are cured of breast cancer, but we don't know which ones. Are we getting any closer to knowing?

DrSusanLove profile image
DrSusanLove in reply to TNBC16

Yes! All of the subgroups of breast cancer help us to predict better and target treatments better! My dream, however, is that we figure out how to prevent it! During my professional lifetime we figured out HPV and how to prevent cancer of the cervix. We can do the same for cancer of the breast. It just takes the will to do it, women and men to participate in research (armyofwomen.org) , money and luck!

TNBC16 profile image
TNBC16 in reply to DrSusanLove

Thank you! I participate in research via armyofwomen.org. I encourage everyone to do the same!

Thank you Dr. Love for your time and energy answering these questions! Now you can give your typing fingers a rest. You can visit drsusanloveresearch.org/ to find out more about the amazing work her organization is doing.

DrSusanLove profile image
DrSusanLove in reply to SBlau

It was a pleasure! I encourage everyone to join the armyofwomen.org ! It is a mailing list that will allow you to get emails about studies looking for participants with or without breast cancer. Only if we all are part of the research will the results apply to all of us! We need to be the generation that ends breast cancer once and for all!

This "Ask Me Anything" with Dr. Susan Love is now closed. We have locked the thread, so that no more questions can be posted in the thread. However, we will keep the post on the community so that you can see all of the questions and answers.

Thank you to all those who submitted questions! Still have questions? Consider starting a new post on HealthUnlocked to discuss among your peers.

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