TNBC, but No chemo, No rads, am I alone?

MBJ

MsBliss:  Re: IPT.  I read about a dr. in Nevada who does IPT but I finished chemo on 3/1 so it is no longer needed.  Because I was going to my integrative dr I received the vit c/mineral infusions and this seemed to help tremendously.  I forget, did you do this with your dr too?

MsBliss

Hi MBJ,

No, I did not do IPT.  I did not have chemo because of secondary health issues, and then rads was delayed until 7 or 8 months post op, so I did not do rads either.  I have just had 2 lumpectomies, the first for a primary tnbc, then the second one for a dirty margin which had a tiny amount of DCIS.  I am kind of flying solo and I get pretty nervous now and then.  But I guess I would probably feel nervous no matter what!

Bliss

MsBliss

Hi MBJ,

No, I did not do IPT.  I did not have chemo because of secondary health issues, and then rads was delayed until 7 or 8 months post op, so I did not do rads either.  I have just had 2 lumpectomies, the first for a primary tnbc, then the second one for a dirty margin which had a tiny amount of DCIS.  I am kind of flying solo and I get pretty nervous now and then.  But I guess I would probably feel nervous no matter what!

Bliss

Sugar77

I would like to buy some of the brocolli extract. I see a few different things written on this thread about it.  Can someone please clarify which is the best for me to get?  I've been trying to eat broccoli every day and even put broccoli sprouts in my fruit smoothies (...doesn't taste too bad!) but think a supplement would be better to get an adequate amount.  

Sherri 

MsBliss

Hi Sugar,

I'm not sure there is a "best one".  I look at brand, and which brand has a good track record for representing what is in the bottle.  There were surveys in which when it comes to vitamins, what you see is not necessarily what you get. 

I like brands that spot check or batch check their stuff.  I hesitate to list brand because I am still discovering who that is and what certifications matter.  Maybe someone else here can add to the conversation.  My favorite brand does not have a sulforaphane specific capsule yet.

Laurili

Hello Dear TNBC Sisters,

I am new to this thread. , I have just been diagnosed with triple negative breast cancer. Stage 2a, grade 3, clean margins, no metastasis, tumor 2.5 cm. I want to refuse radiation and chemotherapy. I am scared, and steeling myself from the barrage of scary statistics the doctors will present me with..Can you please send me the links of research that guided your decisions to refuse or regret traditional medical therapy (including morphine in surgery?). There is so much information out there, and it is pretty overwhelming, and I need to get my ducks in a row quickly so that I can have a clear head and strengthen my resolve when I am confronted by the medical establishment, as well as my own scared family, Who think I should "do everything I can" to save my life. Any additional information you have that is helpful, like the links about supplements and diet, I would appreciate. I truly hope that you are all doing well, I'm so grateful that there are people that have gone before me toward a more natural path. I send you love and and blessings and I hold you in my mind in the light if health.



Sincerely, Lauri

LRM216

While not a one of us wanted chemo and/or radiation, I cannot stress enough to you just how important it is to us TN's.  I was Stage I, 1.2 cm tumor, no nodes, no vascular and clean margins and my oncologist urged me to go as aggressive as I could possibly go.  We only have surgery, chemo and rads and most of our cancer responds very well to chemo (probably the only advantage we have).  Another thing my onc stressed was that I only had that one chance of kicking this beast to the curb forever.  It's the only chance you will have.  You can't undo your decision.  Please consider this from each and every side.  I wish you all the best.

Edited to add - We also have an alternative medicine thread and a holistic thread that you might want to join.

Luah

Laurili, it is amazingly scary when you are first diagnosed, but please be assured that chemo and rads are VERY doable, and, as a TN, they are your best shot at a healthy, long life. (There is a lot of evidence to support this.) I think many of us explore supplements, exercise, diet etc. as a way of STAYING healthy... as a complement and follow-up to conventional medical care... not as a substitute... and there are a few like the OP who are unable to do chemo and rads so they try other things. May I ask why you want to refuse chemo and rads?  

(For what it's worth, and I don't mean to scare you, recurrences in TNs seem to have less to do with nodal status than ER+ cancers. While clear nodes are a good sign, it is by no means a guarantee that cancer cells are not circulating.)

Whatever you decide, please keep us posted on how you're doing. 

MsBliss

Laurili,

I've started and erased several responses to your query.  This is a very difficult answer to compose.

This is a risky choice you are proposing and not a road to be taken if you don't have a thorough understanding of your particular tumor, it's pathology and so much more. 

Negative nodes and margins are not the only measuring stick here. The nature of triple negative puts this all in a different risk category.

LRM and Luah have given excellent advice.  They speak from a real and informed source.

According to my onc and surgeon, I am practically a nation of one.  Triple negative bc, which is over .5cm is rarely ever treated without chemo and rads after lumpectomy.  I understand your reticence to have these therapies, I really do.  I had a deep gut reaction to the proposal every time it was brought up.  But before you make an irretrievable decision, you need to be much better informed.  After you are better educated, you may realize that chemo and rads are a perfect fit, especially if you incorporate healthy life style changes.  All of this must be done with the guidance of an experienced integrative medical advisor.

Still, if you want to discuss this more at length, feel free to send me a private message and we can either communicate through email, or on the phone.  I cannot give you medical advice, but I can give you some perspective and possibly some resource information to get you up to speed.
 

lmcclure4477

I was diagnosed with triple negative breast cancer in January 2013. I had a double masectomy and 8 rounds of chemo. My tumor was only 1 cm and I had clear margins and clear nodes. I did not qualify for radiation after a masectomy and each day I question if that was the right decision. I was told I needed chemo because triple negative is so aggressive that they want to make sure to zap any stray cancer cells that were possibly floating around. I did not like that I had to get chemo but I have to say my body handled it very well and it is definitely doable. I have 2 small children so I wanted to do whatever they recommended to keep me around for my kids.