The power of words

[Juls]

Just started new post "need input"

My Nurse called this afternoon with treatment plan. They seem to have decided already!
Xeloda & Biphosphate to be prescribed. Herceptin to continue but will change to injection in leg instead of IV! Leg to be x-rayed.
I presume I have to continue on Femara as well but forgot to ask about this!
No idea if this new treatment is any good.
Also taken off trial (Perjeta)
The joke is that for 2 1/2 years they have queried a mark on my L1 vertebrae & said it must be cancer.. Even though previous MRI reports etc say not cancer and in this report they have actually written no concern & not connected!!
Lost a bit of trust and hope this week.
Juls

[Juls]

Well -
Attended Hospital on 31st. Everyone full of apologies. Some of my Nurses had no conversation! Oncologist a bit strange. She had been told by Senior Nurse that I was p..... off!! When I saw her I repeated I was indeed p..... off and really wanted to use other words but was being polite.
She asked me what I understood of CT report! When I repeated verbatim and explained details she was rather quiet. Her response " they knew where to look and that subtle change last January". Told her that 2 main reasons for being on trial :-
1 to get drug and
2 to get 9 weekly checks so anything caught early.
I had at least 5 CT's last year all reported as excellent!! Should add that CT's not done at hospital I get treatment in so not their fault.
Not sure what to make of all this. It wasn't till I got home that I realised Onc had tried to get me back to my local hospital but I had casually said I would stay there. Now wondering if she was telling me to go back?

Being sent for Bone scan, x-ray of leg and referral to Orthopaedic Surgeon.

Good bit was that mark on my back "not connected"

Words!!

[Andrea Barnett Budin]

Juls, Just wanted to say I am waiting anxiously to hear you stand with all that's going on with you. You are in my thoughts. I saw on the other thread you posted and mention, NEED INPUT, that you got some top suggestions and input. I have nothing to add.

But want to know how you're doing.

Having my own issues and finding, yet again, that they bandy words about and we are totally focused in to their every word and to their various nuances.

Somehow we need to stop doing that. I saw my wonderful onc on 12/29 and asked him about a phrase on my script for my 12/25 CT scan that I had never heard before. Omental caking was listed as the reason for my scan.

I pondered it for weeks and finally succumbed to google and -- just peak. Horrifying! An array of dastardly possibilities. First 24 hrs I was consoling myself with, Well you've had a good run. 20 yrs since initial dx. Then, I got mad.

When I asked about the phrase, onc said (nurse practitioner who wrote it just threw that out... you can use lots of phrases. mesentary blah blah).
I am a very literal person. In general. And specifically when it comes to my bc.

So I'm saying, Juls, try not to hone in on their every word. Cause they don't seem to get the importance of what they say, or write.

Of course once I had the CT, the radiologist ran w/the "suggested" phrase and added to my angst.

I got same day report, but still it stung.

Now I'm told I have a touch of glaucoma. Very beginning stage. So I felt good after talking to oncological surgeon on the 12/28 and was a mess two days later with my potential blindness.

I have decided -- it'll all work out. Until I know differently, I am going with I will be fine! That's my best advice to you, Juls.

I am still waiting to hear your update and telling myself YOU WILL BE FINE. IT'LL ALL WORK OUT. DON'T BE PREMATURE IN REACTING. TAKE YOUR TIME, COLLECT INFORMATION AND RESPOND WITH FULL ON POSITIVITY.

Please give it your best try anyway.

My thoughts are with you in the meantime, in case you wondered.

Big hug,
Andi

[agness]

I saw a new MO today, she said you are stage 4 (referring to the options a different doctor gave me) and I replied no, I am totally healthy with a little bit of cancer growing in my head.

Words matter.

[Andrea Barnett Budin]

Agness, Yes words totally matter!

What's an MO?

LOVE your attitude!

[Juls]

Andi & Ann
Thank you so much for your replies. Needed them today - not been my best day!!

Got myself totally stressed today over making an urgent dental appointment before starting Bisphosphonate. Due to holidays couldn't make last week and my Nurse insisting on this been done asap - think I must have control issues because I can't move this fast especially when dental work involved!! Found myself really upset over this and all other things!
There has been little discussion about all of this. They have decided on everything except the bisphosphonate and that is only because I mentioned Denosumab etc. Their preference is Zometa. Not sure I want this one but may not have a choice.
CT report 24th & treatment started 31st. No other checks done yet. Bone scan and leg x- ray to be arranged. Could have had the x-ray on evening of 31st but Onc offered it and then immediately withdrew offer saying " you will be wanting to go home." Quite frankly I would have gone for it asap.

They are now requesting all my scans from private hospital for checking. They made a big thing about the same Rad Consultant reading my scans which has backfired. Fresh eyes might have been better!! I can forgive the reading of scans at beginning of last year but the latter ones not so much. Especially when they are already concerned about Femur & being referred to Orthopaedic Surgeon. Pelvis can't be as bad because its not been mentioned again,
I actually sat in Oncologists office trying to be positive. Effectively making excuses for others and saying "had drug for a year that I shouldn't have had, it must have helped". Really Juls -what were you thinking.

Andi - I would have googled "omental caking" as well (confession time - I have!) Hoping all is well.
I know a little about Glaucoma - family history - My Father, Uncle and Aunt. All had same thoughts as you. They were caught early and just have regular eye drops and checks. All doing well.

Ann - Love the words! Think I'll try this next time I see Onc. Mind you don't think she will crack a smile!

[Andrea Barnett Budin]

When you say you don't have a choice re drugs, I don't understand. Here, if I discuss my reasons why I think this over that, they acquiesce. When dx with recurrence ('98) one onc said Navelbine. 2nd onc said Taxol. Fav onc, though they are excellent and I feel blessed to have had them in my life, said Taxotere. Why do I know? So I asked fav onc why he chose Taxotere.

He said, what you have is a highly aggressive form of bc. I appreciate the honesty. HER2+ and 4th stage from the getgo isn't good. They didn't check for HER2 in '95. Not a thing yet. This onc said Taxotere is the most aggressive weapon we have in our arsenal (1998). It made sense to me to fight fire with fire. Navelbine doc chose that b/c it was kinder and gentler. And what I was told was -- what you have is inoperable (tumors throughout my liver, too many to count!), incurable and, you will be on long term chemotherapy for the rest of your life. So he chose the kinder gentler chemo. Taxol was the standard drug given at that time. I went with the harder road.

But my point is I chose which to go on. I participated in my own wellness and my destiny.

They still haven't done a biopsy? That is very odd to me. They did sonogram, CT scan and CT guided needle biopsy with liver. They did surgical biopsy w/breast. All before determining tx.

I do agree Juls -- the drug that didn't prove to be the magic bullet must have done some damage for sure. And yes, they should have caught this way sooner. You were doing CTs ev 8 wks?? That was my regimen. They checked it to be sure the Taxotere was working. Then, they added the Herceptin.

Just sharing my experience as a gauge for you to figure out your situation.

BTW, onc surg saw the CT and said -- I am not worried. You passed the ocreotide scan with flying colors. Nothing there to indicate carcinoid tumor. Then he said he didn't think what is there (in my belly) is omental caking. SIGH... I am sure that what we see in the scans now is fibroid scar tissue. It changes shape over time and that's fine. Nothing to be concerned about. I passed that on to my onc. All were satisfied. Repeat scan in June, as always. Major PHEW.

Thank you for the glaucoma input, Juls. The optometrist (who took well over an hour examining me) said the reason I was having trouble seeing -- I explained that at the outset -- was that I need a new prescription, I have narrow angle. I asked does that mean something with my peripheral vision. NO. It means you have the start of glaucoma. Tell your ophthalmologist. I believe they do laser surg to relieve the pressure and correct this. They go right into the iris.

I had a torn retina yrs ago and they did laser surg on the spot. Amazingly, I felt absolutely no pain and it was completely successful, checked every time I go. Healed beautifully. When I was having the surg I commented that I was seeing a whole lot of purple. (Happens to be my fav color. And I've read it is very healing.) Doc said he had no idea what the purple was about. No one ever mentioned such a thing to him. It was vivid purple and all over...

I am stuck on -- how do they proceed with a tx you have had no consultation on and without a biopsy...

Yes, use Ann's line!

Mind you, when I have come to respond, smiling, I DO NOT HAVE CANCER. We lock eyes. They don't know what to do with me at that point. But I tell my body every day I AM HEALTHY AND WELL. I DO NOT HAVE CANCER. And I KNOW that works.

I got rid of bad cold a few wks ago, mind you with increased Vit C, Echinacea with Goldenseal and Astragalus -- to boost my immune system -- oh and zinc lozenges -- a few times a day -- plus the MANTRA -- I AM HEALTHY AND WELL. NO MORE STUFFY NOSE OR CHEST CONGESTION. I AM STRONG. Then I throw in I NEED MORE ENERGY. MORE ENERGY!

Couldn't believe how quickly I became healthy.

It can't hurt. And it could / does help!!

Please keep us posted, Juls.

[Juls]

When I was first diagnosed in 2013 I was to have surgery & possibly chemo. There was a delay of 2 1/2 months before treatment started. They did not do CT' & bone scan. This delayed treatment. They told me all well. It wasn't. Eventually scans arranged. Small tumour in liver and tiny mark on back. Then sent for MRI - mark not connected but liver was. They said cancer because it had a blood supply. I asked about biopsy, ablation etc. Told No. Moved to another hospital. I did docetaxol, herceptin and Perjeta. I did so well on Docetaxol, that I was asked to consider 2 more cycles of it. Belts and braces idea. Well - no brainier I did.
Liver lesion not seen on CT after a few cycles. Never biopsied and this has concerned me for past 3 years. How can you be 100% on this. Then about 6 months to a year after liver lesion last seen Onc decides it might be worthwhile having it ablated by Liver Specialist. After all she reckoned it was still there with hundreds of cells! So Liver Specialist contacted. Months pass again before he replies. No point now its not seen, so we move on. Then months later mark on back brought up again. She thought it looked better. This is where I lost it. Said I had scan specifically done for this & not connected. She offered me a biopsy. A biopsy for this but not the liver lesion? I refused. No way I was having a biopsy of my spine on a tiny mark that all scans said not connected. This scenario has continued on and off since January 2013.

It will be interesting to see if biopsy of bone will be mentioned after x-ray etc. Again this worries me. After experience with breast biopsy I am a bit concerned. Biopsy done and lump changed shape completely and doubled in size within days.

On the plus side I got my Vit D result - it was 72. Really surprised me it was this high. Especially as one of the Nurses had just had hers checked and it was 17.
Long story short - think I now have trust issues. (Sorry not that short!)
Juls

[Juls]

I mentioned earlier that I was making a dental appointment.
It had to be asap & as my previous dentist not available I had to find a new one. This just added to stressful time. Eventually I managed to find a new one. I convinced myself that I needed a lot of treatment and wouldn't have time to get it done in a way that suited me. My Onc Nurse insisting Bisphosphonate treatment needed to start urgently.
Well - saw new dentist on Friday & back on Tuesday for treatment.
I think I have been lucky in finding her!
I was upset at first meeting due to recent diagnosis (bone mets) and having to tell a total stranger my history.
Well - within seconds realised that she was informative, caring and reassuring - "I want to work with you & have you participate in your treatment in a way that suits you. Not to worry there are techniques etc to deal with dental work and bisphosphonates." " You have not been given enough time to make decisions and participate in your BC treatment & I fully understand."
Not only is she a dentist - she was a Staff Nurse for many years before training as a dentist.
So pleased to find her and get such reassuring treatment.

The power of words!!

[Andrea Barnett Budin]

So glad you found such an outstanding understanding doc.

Yes, THE POWER OF WORDS.

Walk out of there with a smile and a sense of calm.

That's a gift.

Wish more offered that kind of reassurance.

Perfect.

One less thing to worry about and spend time agitating. Yay!