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.

I'm more interested in other's experiences with cannabinoids than soliciting non-professional advice.

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

[jwirr]

1. No advice but wish your wife the best.

[masmdu]

2. Thank you!

[Tierra_y_Libertad]

3. My wife went through surgery and chemo for another form of cancer.

A sarcoma in her knee. It involved removal and a knee replacement. That was over 2 years ago. Very recently, she had to have a portion of a lung removed because the cancer had spread there.

She's doing well and recovering now. No chemo this time, just surgery.

My best to your wife and you.

My advice, for what its worth based on our experience, listen to the doctors.

[mercuryblues]

5. 2nd

that advice.

best wishes for a positive outcome.

[MineralMan]

4. If you want a second opinion, ask other physicians,

not random people on the Internet. You'll get far better advice, based on actual knowledge. Best wishes to you and your wife.

[Ms. Toad]

12. Some of the best medical advice I have received has come from

random people on the internet. Although more accurately they are not random - they have the same uncommon health conditions which I or members of my family have. People with uncommon health conditions often know as much or more than the doctors do - and the specialists treating the rarest condition in our family actively seek out information from the people living with it. I also pass the gift of sharing information sharing on. I regularly hear from others how useful the information I have given them is. Less frequently, but still not an uncommon occurrence, I hear second hand about doctors that the information I passed on triggered a change in treatment protocol.

So don't knock the voice of experience. That is not to say all medical advice from random people on the internet is useful, and I never act on it without doing additional independent research. But I do find it an invaluable tool in my medical toolbox.

[magical thyme]

16. asking others about their direct experiences and resources does not equate to asking for advice

nor does it exclude getting second and third opinions.

[Aerows]

19. You gave me advice to call

the county health board when I got bitten by a raccoon that was possibly rabid.

Are you suddenly dispensing bad advice?

[MineralMan]

20. Same advice I gave you.

Consult medical professionals.

[Aerows]

22. And it was sound

but don't go saying you aren't a dispenser of common sense.

[Aerows]

23. And here is the truth

I was frightened, didn't know what would happen if I was infected, reached out to DU, and DU delivered.

I was scared to death.

Ya'll can make fun, but it was a frightening incident, and I am here to live to tell of it, despite the situation. And yes, you Mineral Man, encouraged me to go to the hospital, and if I hadn't I'd probably be dead by now.


- Aerows

[DavidDvorkin]

6. My wife had a mastectomy on one side

Years ago. At a low level, she's been worried ever since about the other breast and often says she wishes she had had it removed at the same time.

However, Mineral Man is right: Don't ask for second opinions from non-specialists.

[masmdu]

8. Thanks for the reply. I guess I'm more interested in other's experiences with cannabinoids than

soliciting a non-specialist's second opinion. (I'll edit to make that more clear)

[ga_girl]

7. A web friend created a site to blog about her breast cancer

Google "but doctor i hate pink" and search Facebook.

She was diagnosed with breast cancer in 2009 and kept a detailed recount of her journey. Her cancer metastasized to the liver in 2011 and was considered incurable. She's speaking at SXSW in a couple of days.

Ann has become somewhat of an activist in opposition to the Komen Foundation. Her concern is that an awful lot of money is being gathered for breast cancer awareness, which should be better directed to research. Can't say that I disagree with her.

The big takeaway that I got from her postings is to be very involved with the doctors, diagnosis, procedures. I think she was taking home copies of all of her labs and independently researching the terminology, codes, etc.

[pansypoo53219]

9. like PETA, komen is a kardashian of charities. the UGLIEST of pinks.

[Hekate]

10. Listen to the docs. Get a 2nd opinion from other docs. If it were me...

... that's what I would do. I'd also get a medical marijuana card asap, and use it for nausea and anxiety.

Here's what I would NOT do: try to heal myself "wholistically" with herbs and teas. I had a friend who did that -- just did not want to subject herself to the knife and poisons of conventional surgery and chemo. She died within a year.

Best of luck to you and Akiko.

[SidDithers]

11. Listen to your doctors...

they know better than anecdotal information from anonymous internet posters.

Best wishes for the fight ahead of you both.

Sid

[Dont call me Shirley]

13. Get several MD opinions.

Also seek medical MJ expert opinions.

I feel for you and your wife. I am a bc survivor, triple- stage 3. Wish I would have used medical MJ in addition to chemo and radiation treatment I underwent.

Best of care, good and speedy healing.

[bettyellen]

14. hemp oil is bullshit, save the MJ for treating nausea from the chemo- schedule the surgery asap

invasive is nothing to fuck with.
good luck.

[shrike]

15. Her cancer is in both breasts?

Highly unusual, unless it's lobular. Lobular cancer spreads from breast to breast, unlike ductal, so that may be why they're recommending double mastectomy.

I'm surprised they would recommend a Bi-lateral, since first choice of most doctors is lumpectomy, in my experience. (I'm a BC survivor.) I can only assume this means the tumors are large. OTOH, in the event of large tumors many oncs order neo-adjuvant chemo (meaning chemo before surgery) to shrink the tumor(s). Without knowing more about your wife's diagnosis there's not much I can tell you.

If you're not comfortable with what your doctors have recommended, I'd seek a second opinion. I would also advise you NOT to rely on any alternative approaches because, unfortunately, not enough research has been done on whether or not they are effective. MJ is now being marketed as a miracle drug, but I'm not sure whether that's just people blowing smoke (excuse the pun) because they want MJ legalized. It's just too early to know for sure, and I wouldn't risk my health on unproven therapies.

If you're going to try anything alternative, combine it with traditional treatments: to do otherwise is like Russian roulette.

Your wife might want to check out Breastcancer.org. It's a site run by doctors, and includes some on-line incredible discussion groups for patients. She could search the site and see what, if anything, she can find on alternative therapies like the ones you mention.

The Cancer Support group on DU has great people participating in it.

[taught_me_patience]

17. Use cannabinoids as adjunct therapy

to chemo and surgery. Move fast, though... don't want it to metastasize to other areas.

[undeterred]

18. When doctors get cancer they go to MD Anderson Cancer Center in Texas

If you can go anywhere for a second opinion on cancer, that is the best place in the US to go.

[riderinthestorm]

21. Get a second opinion. Listen to your docs and do what they tell you.

MJ is fine as a supplemental to the treatment the doctors prescribe but I wouldn't rely on it exclusively.

It's great for dealing with the nausea of chemo.

Best of luck to you and your wife!