Breast Cancer. Double Mastectomy recommended. Other alternatives?

[masmdu]

I have participated less and less in recent years in discussions at DU, but today I find myself in need of the collective helpful knowledge and support I often find here at DU.

My wife, Akiko was diagnosed with a high grade invasive cancer in her breasts and the oncology team is recommending a double mastectomy and chemotherapy. Cosmetic concerns are the least of our worries we would just like to make this battle as successful as possible.

We have never dealt with cancer before and we "don't know what we don't know" (excuse the Rumsfeld quote).

I would appreciate any sharing of information about what others have found to be helpful in their similar experiences as well as any resources we would benefit from.

Also, any info about concurrent alternative approaches such as Cannabinoids (CBD), Rick Simpson Hemp oil, or anything else would be great.

Thank you ahead of time to anybody willing to take the time to share with us.

[Hoyt]

1. Don't have anything to suggest, sorry, but I will be thinking of you and your wife.

Hope some folks with direct experience offer comments.

Smart to ask though.

[cate94]

2. I wish I could tell you what you need to know.

I followed protocol, and suppose they know what works -as best as they can. My breast cancer was early and should have been easy, but things aren't always as they appear. My best advice- based on what you have shared is get a second opinion. Odds are that your second opinion will be recommend the same thing, but if it gives you peace of mind, then yay!!

Good luck. I will be keeping you and Akiko in my thoughts.

[Solly Mack]

3. I'm so sorry. You'll both be in my thoughts.

A support group is a must, I believe. One of the best possible resources available.

I had to learn to allow myself the bad times and to make the most of the good ones. To know I wasn't alone in my fears and that my joys, no matter how small, were shared.

One day at a time isn't a cliche when dealing with cancer. It's a way of life.

[Uben]

4. In my wife's case, she chose to have both breasts removed....

....because the particular type of cancer she had was one that had a tendency to recur in the other breast. That was the deciding factor in her decision. She lived ten years after initial diagnosis and surgery, and she refused chemo and radiation. When it finally did recur, she took both radiation and chemo because it had metatisized to other organs, but she succumbed after only three chemo treatments.

I'm telling you this to give you an example, not to make any suggestions of what to do......that choice is between her and the doctors.
When the cancer returned, it was never positively identified, even though three different labs attempted to do so. So, I don't even know for certain if the cancer she died from was breast cancer or not, but odds are it was.

She didn't use a particular CBD strain of cannabinoids but did use medical marijuana because of an article that stated it could help inhibit new tumors from forming. It also helped with the nausea from the chemo.

I'm so sorry you guys are faced with these decisions. Read up on the type of cancer she has and try to find others that have fought it. Participate in breast cancer forums, that is where we learned the most from other's experiences. She was a regular on BCANS and took solace in communicating with other breast cancer patients. You can learn a lot about what others have tried and I'm sure you will find suggestions or instances where they used other MM alternatives.

Also, it helps to relate your own experiences with others, and this board was a godsend to me while we were on the journey. You'll find a lot of good folks here to talk to. Sometimes you'll just want to vent because it can be frustrating, and we are here to lend an ear and commiserate. I wish you both good luck on your journey through this disease and I hope you enjoy many more years together.

Uben

[Ruby the Liberal]

5. I am sorry to hear that she is dealing with this

Back in 2013, I was Dx with early breast cancer. Non-invasive cells in one breast and atypical precancerous cells in the other. I chose the bilateral mastectomy and reconstruction, and believe that was the best choice. First, because the surgeon who Dx me and gave me options told me that my choice is what his wife would do if she were faced with the same decision - I got some comfort from hearing that. He was willing to do any of the options, and seemed to be relieved that I went for the full blown deal. Secondly is because I didn't want to go through the 2x a year mammograms/ultrasounds and that 'unknown' factor waiting on test results so often. I don't have the temperament or patience for that, but we all are different.

http://www.breastcancer.org was a life saver for me. They have excellent articles and resources, and their message boards are full of people dealing with decisions like this.

I can't speak to CBDs - cannabis is still illegal where I live. That said, I did procure a bag of flowers for smoking, and it helped immensely with the nausea and the inability to sleep. Given that the only side effect of cannabis is a prison sentence, I would do it all over again. NOT to replace other treatment, but as an add on. It worked wonderfully for what I needed it for, and I was flying blind without recommendations. I just bought what I could find on the 'street'. Since you live in an area where people are available to help with strain decisions, my recommendation is to talk with a budtender as to what you are looking to accomplish for her.

You all will be in my thoughts and prayers as you embark on this journey!

[shrike]

7. Another vote for breast cancer.org

And this group. Great support from both.

I, too, had BMX and reconstruction, and don't regret it.

Never did CBDS, but I didn't need chemo.

[Tab]

6. Sorry you're going through this

Although I don't have breast cancer myself, I have numerous close relatives that have. Without fail, as far as I know, they go for a double, so they don't sit around second-guessing and worrying all the time (paraphrasing their explanation). All solutions are individual of course, both in terms of of what works for you mentally/personality-wise and what works for you medically.

Everyone will support you no matter what.

- t

[wordpix]

8. I have cancer but not breast - here is info on mmj, diet, convent. treatment

http://www.cancer.gov/cancertopics/pdq/cam/cannabis/healthprofessional/page4

Also here's the website of a woman who's lived 12 years with metastatic disease (liver, lung), which was diagnosed when she was only 30. She is a cancer prevention food guru: kriscarr.com. She has books, vids, cookbooks you can order at her site.

There are more links at the NIH site and all over the web. Basically the above PROVES CBD is effective in antitumor properties for breast and colon cancers. However, the studies cited were done on animals, not humans, and that's b/c there IS no human cancer/CBD/mmj trial conducted by NIH. However, there are studies from around the world indicating mmj is effective for some human cancers.

That is by no means to suggest not doing the surgery. The colon/liver surgery I had literally saved my life b/c the colon tumor was obstructing my plumbing and I was really sick. The very experienced surgeon said to me, "You won't last long" without the surgery, and all docs I consulted told me to do it immediately. I'm glad I did!

Bottom line is you need to do all research possible to intelligently discuss the options with your docs. Also,go for 2nd and 3rd opinions from top cancer hospitals (usually located in big cities). Small hospitals/clinics in small cities are not the place to resolve big cancer problems, IMO. I live in a small town but had surgery in a big city hosp. with top surgeons, then did the conventional chemo at my nearby cancer clinic.

I also am on my own organic diet based on Kris Carr's + exercise and supplements. So far I'm 6 mos. past chemo and cancer free. Not breathing easy yet but happy! Good luck

[slipslidingaway]

9. The only thing I can say ...

is that we have met several people who underwent a chemo regimen for breast cancer that ultimately had the side effect of MDS and or AML and then had an a stem cell transplant. Inquire as to the side effects of the drugs in the protocol they are using. Wish I had more info for you, might be able to find out more if you cannot through the breast cancer networks.

Wishing you and your wife a speedy recover and the best outcome.