Lauren, I am continually appalled at how many people are treated by the medical community. Women on this thread have described how they had surgery, were released and had to go back for more surgery because days later pathology reported that margins weren't clear. Women like you wait weeks for results. The wait times for results are inexcusable.

When I was diagnosed I was eligible to go to a VA hospital for all my care. This was my timeline. 1) I found a lump and called the VA for a mammogram appointment. I was seen the following week. 2) I had my mammogram which was immediately read by a radiologist and he called me in for a ultrasound within minutes. He didn't like what he saw and he did a biopsy then and there. 3) I waited three days for the results and the same radiologist called me at home to tell me I had cancer and was scheduled for surgery in two weeks. 4) I had surgery and while I was still under, my tumor was sent to the lab to determine if I had clear margins and the lymph nodes were examined at the same time. If more tissue had needed to be removed, it would have been done while I was still under. 5) My surgeon saw me the following day, she explained my pathology finding and I was set up for radiation to start as soon as my incision healed. From finding my lump to being released after surgery, less than a month.

Not only should you discuss everything you mention in your post. You should raise holy hell about the lack of empathy and compassion of that medical center.

Did your doctor not have a back up? You might want to ask about that. Perhaps the problem is with the administrative staff not coordinating with the back up doctor.

The VA give wonderful care but in some hospitals the administrative staff are incompetent.

The doctor finally called:

1) Multiple active nodes in the right neck. (these are the ones we knew about)

2) Paraphyrageal (sp?) node near esophogus - inoperable

3) Indeterminate areas in hilum (near lung) and T12 bone - little bit of uptake, but indeterminate. 

With the node in the esophogus, she is recommending no surgery and getting started on the Kisqali as soon as possible. If I can get a second opinion with someone who recommends the lymph node removal, then I can have the surgery but would have to switch doctors completely. 

I have decided to start the Kisqali, and see what happens at the 3-month PET scan. I'm not 100% convinced this is the right move, because two of the three reasons she is recommending against the surgery are indeterminate. If they are not cancerous, then I'm putting off taking out a whole mess of cancer for just one inoperable node. Is going without surgery the most aggressive way to go about this? I suppose I can look for a second opinion once I'm on a treatment and need a second line. 

What do you think of my decision, BCO'ers? The women on this board can be my second opinion.

Not the news I was hoping for, but all in all it could have been worse. 

Off to watch baseball and eat myself into oblivion. 

Lauren

And yu have the node to watch to track the response to chemo

Lauren, I hate like hell to hear that. I'd probably start chemo right away and then seek a second opinion, too. Do you like that MO? Did she seem responsive to your concerns about the long wait? There's some research that shows that people heal better when they trust their doctor, so if that's not the case, that's even more reason to get a second opinion. I've been thinking about you today and just couldn't get to a computer until now. Please keep us posted.

Starting with chemo does seem like a sensible option. The fact she is no nonsense would appeal to me too, I prefer that to a wishy washy doctor who doesn't give me a clear path. My radiation oncologist I initially thought seemed very inflexible, but I've realised now she was only inflexible about the important things, and is now quite flexible in regards to things which are not as crucial.

Yes Cancer is a pain in the balls!

There is a ton of scientific proof that diet profoundly affects health!

Yes, there are clean eaters who get sick, and also crappy eaters who don't get sick-- but statistically, the processed western diet is very linked to poorer health outcomes. And cancer has many features of metabolic disease, a la diabetes. Obviously some clean eaters have genetic mutations like BRCA which undermine their health, and some of them grew up with chemical exposures (I am a DES daughter). But in general, eating healthy foods is much better for you. It's annoying how people think one yogic vegetarian they know getting cancer disproves the benefits of diet and exercise... Show me the stats on 500 vegan yogis vs 500 cake eating couch potatoes, and we all know which group will be less ill.

I changed my diet upon being diagnosed -- and I feel wonderful. I am down 30 lbs. I east almost zero processed foods and largely organic/vegan. I am happier pulling in my own direction, and not against myself. If I recur, I won't have any regret for not doing the things I *could* do to help myself.

I had a consult with an integrative oncologist and am following his evidence based plan for best eating practices. If you are interested he has a book "Life Over Cancer."

There is a ton of evidence regarding who gets the least cancer, and who does not recur, based on diet and exercise practices. Dr Block's recommendations follow these known 'best practices.' Exercise is huge. VERY beneficial against recurrence.

The reason that an anti-cancer diet has not been definitively tested in a double blind trial is that a double blind trial costs $50M to do -- but nobody gets rich on the other side. However, clinical practice shows a lot. For example, Dr Blocks stage 4 patients live much longer than average for stage 4 people. And he gets many patients when their MOs say nothing more can be done. And in certain countries where the diet is less junky than USA, people get less cancer. That's enough proof for me.

Dr Longo who has pioneered fasting had trouble getting people to fill a trial. Very few people were willing to fast. Thus he developed fasting mimicking. It's a huge benefit, but people resist it!

Meanwhile we have proof for the anti-cancer benefits of a lot of specific foods: alliums (onions), cruciferous vegs, mushrooms, garlic, ginger, green tea (EGCG), cinnamon, peppers, red grapes, green leafy vegs, berries, walnuts, tumeric (curcumin), Omega 3-rich deep sea fish.... These are all foods that science has shown are active against cancer.

So far I have seen nothing showing cupcakes, soda, lard or white bread benefiting anyone...

LOL- a Tennessee resident who doesn’t watch football??! You are a rare bird Wanderweg. . I live outside of Dallas and don’t watch pro football. During Cowboy games is when I try to do errands or go to the zoo because it’s a ghost town out there!

Yes, I am still figuring it out, but it’s becoming more and more clear that some major health habit changes are in the future if I want to last awhile. Makes me sad, but then again, there’s a big black before and after line when it comes to MBC. My old life is essentially over and my new normal has to start ASAP. Or after I finish the key lime pie in my fridge.

Look at The moss reports by Dr Ralph Moss. He has a ton of the science. I will see what links I can post.

Lauren definitely finish that key lime pie, if you don't I will. Although I might have to book flights to get there.

wanderweg I don't like watching sports either. My mother does, she can watch them all day, but I didn't inherit that gene. Not liking to watch sport is perhaps rare in Australia, most people are sports mad here. I would rather visit an art gallery!

thanks, magiclight, so many studies are so flawed. I worked on one as a medical research interviewer..watch out for the motives of the contracting organization.

SoCal, looks like engagement with others, in virtual or live settings, is important. Thanks for places like this for group participation and helping my psyche on so many days.

👍👍👍

SoCalLisa, you are so right!!

Wander, love the shirt