Met w/Onc today, sick to my stomach

Crescent5 · February 2012

Why does this stuff just get worse and worse? =*( I'm sorry, I know many women have it worse. I'm just tired of getting crappy news. It just won't end.

I was dx'd with LCIS & PLCIS in 2010 putting me at high risk. So I took a year researching, went to my 6 month tests, kept getting all clear & decided in the end that NSS PBM was right for me. I wanted off the 6 month roller coaster, and I knew that once invasive was in the body, there was always a chance for mets. I was terrified of that.

I had my PBM in January. Was suppose to go direct to implant, but due to a complication, got TEs. Was not expecting them. Had to adjust. Right nipple turned gray. Wasn't likely to survive. I had to adjust. Then my BS called to tell me the pathology came back. They found 2 spots ILC 4mm & 7mm. Would need ALND to make sure nodes were clear. But cancers were small, and prognosis would be good if nodes clear. I adjusted.

Nodes were clear, BS said I had a 6-7% chance of reccurrance, and that was very, very good. Said tamox would probably not be recomended as risks outweighed benefits with such a low reoccurance rate. I accepted that. Decided I should see an onc in a major city (wont say where just yet, cuz Im not sure if I like this guy).

Nipple showed signs of pink just as BS said it might have to go. I developed cording from node removal. I adjusted. Found a great lymphedema specialist/PT to help with cording and the muscular problems I'm having around TEs likely made worse by stress.

Asked for oncotype test and was told I really didn't need it since chemo would probably not be offered. I accepted that.

Finally, nearly a month later, went to see Onc today. I absolutely hated this hospital. It was huge, foreboding. confusing and crazy. Waited forever for Onc. His student examined me. Great. Waited another 30 minutes. He came in and examined me. Said to get dressed and meet him in the conference room. Waited in there.

Then he spewed out that he was putting my recurrance rate @ 15%. I cried. I just cried. My tumors were less than 1 cm. 15% sounds so damn high after believing it was 6-7%. Will know better after oncotype which as you know takes a month. Talked about putting me into early menopause. Talked about BRCA testing since I'm of ashkenizie descent. Wouldn't rule out chemo. Told me I'd be coming in every 3 months for bloodwork. WTH??? I know there's no cure, but I thought I was pretty close because it was so early, the mri 3 months earlier didn't even see it. I also know this is all thorough, but I wasn't expecting all of this. I sobbed and said, for the first time, "I have cancer, its not that I had cancer."

Last week my PS declared the nipple had made it. Yesterday, my range of motion was getting better. Last night, I slept so well on my side that I only woke up once. Today, I learned that my nipple *may* have to go after all.I learned that things could be much worse than I thought. I don't feel like I'm healing today. I feel like I am sicker now than I thought. I can't stand it. It seems that there's never good news without some horrible crap looming. He said a month isn't that long to wait, but I could have had that score if they gave me the test I asked for a month ago. I feel like today's appt was nothing but worse case scenarios (what dr does that??). It was not reassuring at all. It's all backwards since they found the cancer after MX. But it still keeps getting worse! When will it get better?

Thank you for listening. I feel defeated. I know many have been thru so much worse, and I apologize for whining. I've been strong. I've been trying. Today was going to be a hopeful appt, not terror in the conference room.

sewingnut · February 2012

Whining is allowed here. You've been on The Mad Hatters ride and just want to get off. Do they know what kind of treatment you will be getting? Good luck.....

Omaz · February 2012

Crescent - (((Hugs to you))) You have been strong through it all. I do hope that things start looking up and you get a low score from the oncotype test.

Crescent5 · February 2012

They wont know treatment until oncotype come back. Hard not to worry for another month.

Crescent5 · February 2012

ps thank you ladies.

M-Aug · February 2012

Sending hugs your way. I have had a couple of weeks of sucky appointments and I am right there with you. Nothing wrong with venting!

Anonymous · February 2012

It will get better once you have a treatment plan in place. Use this month while you wait for the Oncotype score to research.

Because they would want to start chemo within 12 weeks of surgery and you will be at least 9 weeks out when the results arrive, you want to go into that next meeting having some concept of what you are willing to do given different scoring scenarios so you are not blindsided and pushed to make treatment decisions on the spot with no opportunity to research whether you would be willing to do chemo at all, and under what circumstances you would be willing to do which combinations.

If you are uncomfortable with this oncologist, by all means, find another Medical Oncologist. No matter what, you will probably be dealing with this doctor on a regular basis for the next 5 years at least. You deserve to feel comfortable with your doctor, because you are literally trusting this person with your life. Cancer treatment is stressful enough, if you find the setting in which you will be receiving that treatment foreboding, confusing and crazy, that will only add to your stress rather than relieving some of it.

Wishing you a low score and easier decisions going forward.

jenn333 · February 2012

Crescent - sorry for the sucky news. Just wanted to mention that my Oncotype was back in less than 10 days (this was back in November) so maybe you won't have to wait as long as you think.

Crescent5 · February 2012

Thank you so much ladies. I guess I just didn't even think chemo was a consideration with <1cm and no node involvement. I thought I dodged a bullet. This whole process sucks. I should have known this was possible before I went there today. Everything's backwards.

edit to add: Thank you Jenn! That would be great. The waiting is so hard as you all know.

edwards750 · February 2012

Crescent - I agree find another oncologist. Our Onc are going to be our like best friends for years to come so you have to have a good rapport with him or her. I am lucky; I really like mine. She is well known around town and found several people who also go to her. She is straightforward and compassionate. I had the Oncotype test done; what a lifesaver for me because I didnt have to have chemo. Had I not had the test I might have had to. I had a micromet in my SN and the Onc decided to have me take the test. It came back at 11; cancer not as aggressive and smaller than first thought. Worth the wait but hard to wait because so much is riding on it and I got my score back in 10 days. They told me it would be 10-14 days. Month sounds too long. I can relate to how you felt when you expect one thing and your news is the polar, sucky other side. My BS was convinced my nodes were clear...one was not. It was small thank goodness but still there. In the end I came out okay and you will too. Let us know. Diane

Snoopsmom · February 2012

Crescent - my Oncotype took only 2 weeks as well...here's hoping yours is quick too! Sending positive vibes your way.....

perky · February 2012

To put it another way... Sounds like you found an aggressive doctor. I don't care if he has no personality as long as he is focused on getting me healthy. I would rather freak out for a little while and really know where I stand for the long run than hear nice things and have a surprise later. Your oncotype could still show that it's early, no chemo, etc but you can move forward without any what ifs.

Sissydi · February 2012

Hi crescent! I feel the same way......diagnosed really early stage, and with every appt., news got progressively worse! it's so I almost have an anxiety attack before an appt!

Crescent5 · February 2012

Thank you ladies. I am so sorry you all have been there with this cancer crap.

I like that the guy's aggressive. I'll give him that. I'll probably seek a 2nd opinion though.

Blessings2011 · February 2012

Crescent5 - yep! Sounds familiar......needless to say, the first appointment with the Oncologist is at best, sobering....

I think we ride high on the crest of the wave of "They got it all!" "You are now cancer-free!" and then we get the blast of reality when the MO give us the statistics....

Big hugs to you....and hope that it's time for good news.

toomuch · February 2012

Crescent - The unknown and waiting is actually the hardest part and it sucks that your doctors gave you conflicting news and that the BS didn't request the oncotype test as soon as ILC showed up. I second what others have said though. I had my oncotype result back in 10 or 12 days. You've been waiting long enough. I would ask the MO's office to call for the result at 2 weeks. My RO wanted the results at my consult and she called for it and they faxed it straight over to her. She gave me the results before my MO. I also had cording after my AND. A good LE therapist is priceless. I'm glad that you found one! (((hugs)))

Outfield · February 2012

Crescent,

I am at a different stage and different place in my treatment, but those early times of uncertainty were the hardest ones for me. I am so sorry you are going through all this. But I am glad you went to the second opinion. Even a doc who is unpleasant can sometimes be useful to you. It sounds like you feel you'll be better off knowing the Oncotype score.

But are you going to settle with either of these oncologists? Sounds like neither is perfect for you. Do you have other options to try? I am in the process of finding a new onc because mine is moving, and I am so relieved to be going through this process when I'm not in the crisis phase of having just been diagnosed. It's unbearable trying to work out all the nuts and bolts parts of setting up appointmnets, and even figuring out who you should see. Do you have some good friend you could delegate to helping with that?

If the nipple does have to go, kiss it good-bye. For real, not figuratively.

Jeannie57 · March 2012

Crescent,

I know what you mean. I was diagnosed January 27th with ILC in one breast, grade 1. Caught it early! they said. Then the MRI showed spots everywhere, in both breasts and my lymph nodes were swollen and suspicious. Then the ultrasound core biopsies in the left breast were fine and the nodes looked good. The MRI biopsies on the right breast, the cancerous breast, looked good, too, other than the cancer, of course. So I had a lumpectomy on February 14th with SNB. The doctor said everything went well, looked good. But path. showed macro. in one of 3 nodes and the doc didn't get clear margins (2.2cm cancer). Also, the tumor tested grade 2, not 1! So now I am having a BMX with lymph node dissection on the right, SNB on the left and I'll need chemo and maybe radiation! It just keeps getting worse. I don't know what to do about reconstruction. It's all just so much.

I am glad you posted on this site and I'm grateful for all of the positive stories. I, for one, will give this all I have and will try to stay positive and hopeful because that is good for my health! Good luck to you.

Crescent5 · March 2012

Jeannie, I'm sorry you keep getting difficult news. Hopefully that will turn around very quickly. I wish you the best of luck. {{{hugs}}}

Racy · March 2012

Crescent5, this post caught my eye as I remember praying for you after your previous post when you were terrified of mets (as we all are). Did you have scans? Anyway, I hope my prayers worked then.

What you have experienced is the BC rollercoaster and is not uncommon. But you have met every challenge with resilience, which shows your strength.

The previous posters have given excellent advice. Try to enjoy this period while you await your oncotype score because if you do decide to have chemo, you might have to put enjoyment on hold for a time.

When you get your result, come back and talk to us about it. That will also be the time to get another opinion from a treatment centre with a superior reputation.

And you could also consider counselling to help with processing your emotions, and perhaps an antidepressant. These strategies helped me on the rollercoaster, and still do.

I will pray again for you. Keep in touch and focus on enjoying this current cancer holiday interlude.

Crescent5 · March 2012

Thank you so much Racy. I received my score this am, but didn't post in light of some bad news I had read on the boards today. My score is 6, which is a huge relief. I will meet with another onc next week.

I also just found out that I have no LVI. That was practically glossed over, so my feeling is, if you don't have it, it doesn't mean much. If you do have it, have a discussion with your onc.

While I really appreciate an aggressive oncologist, I don't think it's fair or necessary to scare patients. By virtue of the fact that I had traveled to see this guy, it was obvious I was taking this seriously. I don't think he needed to give me all the worst case scenarios without offering much hope. Not sure what his problem is, but he really knocked me down.

I'm so grateful for the good results & for people like you ladies who were there for me. Thank you.

cookiegal · March 2012

I am so glad things are better. My experience was different than yours, but I did have an initial very positive prognosis go downhill, and after being told no chemo, had chemo suggested.

It was stressful and upsetting, and really took me a while to sort things out.

Oncotype of 6 is fabulous. I think the L's are usually lower oncotype.

I have a suspicion that the more unusual your cancer is, the more the docs are just guessing on prognosis, and that may account for the divergent opinions.

SheChirple · March 2012

Cresent - congrats on the great OncoDx score. Mine was 7. What a releif that is.

I'm wishing you well in all your future treatments and recovery.

dunesleeper · March 2012

I agree with those who say to find another oncologist. So far, everyone I have worked with has been great. Now that is the standard of care I am expecting.

Racy · March 2012

Crescent5, I am overjoyed to hear your oncotype score.

Remember, we are always here to listen with understanding if you have any more hiccups

Wishing you continued good health and happiness.

Met w/Onc today, sick to my stomach

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