My (perhaps controversial) thoughts as a "newbie" to CA.

Trill1943

ChiSandy and exbrnxgril, again fascinating information. This is all new to me.

When I was having my first bc consult Dr Friedman asked if I had relatives who were Jewish--I think that was the question. I asked him why that was significant and he said that there's a link with certain cancers. Did he say a link with the Ashkenazi? I think maybe so.

Who are the Ashkenazim?

exbrnxgrl

Ashkenazim are Jews of Eastern European descent. Many came from Poland, Russia and Romania. Their lingua franca was Yiddish . Hebrew was the language of theTorah. There are still Hasidic communities, even in the US, where Yiddish is the primary language.

Trill1943

Thanks, exbrnxgrl!

Trill1943

Hi ladies--

Just wanted to drop a note to say Hi.

And to say WHAT A WORLD OF DIFFERENCE IT MAKES TO HAVE THE DRAINS OUT! The incision still burns when I rub against it but otherwise is a far cry from just two weeks ago. I see my breast doc this week, probably a sign-off with her before heading to MO next week.

Am doing the p/t exercises they gave me to get flexible once again and see pt/ gal every week for more.

Am so glad it's winter and a jacket more or less conceals the chest flatness but can see the day I get some sort of bra with some padding even though I'd thought I wouldn't bother with one. But bras also are helpful in terms of warmth--something it's easy to forget until stepping out into lower 30 degree weather or if it's gusty.

Hope you all are well and having a nicely-eventful or non-eventful winter...

t

JBeans

Hi, I'm glad you've got the drains out. I hope your healing progresses well. Stay warm, it's a chilly one here tonight too.

J

bluepearl

I haven't read all the posts but your breast cancer is quite early. Yes, chemo will be offered because it is triple negative. I totally understand where you are coming from. In fact, first time around I wasn't even thinking letting nature takes its course....I was contemplating suicide. Seriously. I was that afraid, especially of chemo. Nausea feels like a HUGE panic attack to me. I had too many over the years. BUT......with a treatment plan ahead of me, I calmed down. That and antidepressants..lol....I missed chemo twice altho I kind of wanted it the second go because of the grade three, but after reading science journals, anything that is 1 cm or less usually has a good prognosis regardless of grade...but TNBC has one positive note to it. Chemo gets it. and after 5 years your chances of recurrence drops into single digits...unlike hormone positive breast cancer. When I got my first breast cancer I worried and worried about getting it in the other breast and two years later, I did. Worrying didn't change a damned thing. I have had friends recently die from accidents...no one is guaranteed anything..let alone the next hour. I have learned to view things this way now. A woman in a rehabilitation clinic where my stage 4 sister was, lost her legs and her hands to diabetes, had failing kidneys and an operation on her mouth and just before she left the building, was diagnosed with bilateral breast cancer. It is a very hard journey for you and all of us. Some have it even harder. IF you decide on chemo, I would just like to add that my sister goes in the infusion room now for a year and it is a place of laughter, friendships, stories, caring and sharing. It almost makes up for the chemo treatments!!!!! Stay positive, hang in there, let people put their arms around you in the treatment room, make new friends, and know that your cancer, at this moment is very treatable, and look towards good health in the future. The end of a thousand mile journey begins with the first step!!!! The world doesn't need to lose you yet. xoxoxoxo.

Trill1943

HI JBeans--- Thanks! Here we're expecting this huge storm tonight...today the bra-less-ness really felt chilly out there at the store! Trill

Trill1943

HI bluepearl--

What a lovely post from you! Thanks so much! I've settled into a kind of calm these days and words like yours are the reason....

The surgery and then the drains etc had me on edge 24/7....such a hard time sleeping! Lately, and now that it's finally turned cold--I mean winter cold, not fall cold--and felt seasonal, I've been sleeping a lot. I think it's just because for weeks I tossed and turned, never getting comfortable, even though I applied all the tips and tricks...there was no getting away from the burning pain and those pesky drains, I dragged them around with me. I was so surprised to hear that some women can have them out in as little as a week to ten days...

I just went to the mailbox to retrieve a package---a small one--four ounces of broccoli sprouting seeds. I was doing a "let's read some studies and journal articles" day and read that the best source of broccoli goodness is not so much the actual floret you put in your salad but broccoli sprouts. So I ordered a little packet of them. Interestingly enough, the study was done by guys at Johns Hopkins--spellcheck just changed Hopkins to "Hiplines" !!--guys at JHH might get a laugh out of that--where I go. I love sprouts and plan to put them in with my kale drink items. Let's see--how many is that now? Ten? Twelve? Nowadays I need to "drink" it with a spoon....

Anyway, just thought I'd pass on this tip re eating healthy--get the sprouting seeds! They pack more wallop than florets alone...

Thanks again dear bluepearl--your words warm and encourage me!

Love, Trill

ShetlandPony

It took me a while to get back to this thread. I would love to see Pantaloon's happy dance. It sounds adorable! Re: your jar--you reinvented the chamber pot. If Queen Elizabeth I could use one, so can you.

(Edited to correct the kitty's name.)

JBeans

Nothing wrong with a chamber pot. :-)

ShetlandPony

Useful when the plumbing breaks, too.

Trill1943

Hah-hah-hah ShetlandPony and JBeans---

Yes, the good old chamber pot! When I wrote that story of tossing the contents of my pee jar out the window, I felt embarrassed later and thought, oh, girl, you go too far! But it was fun writing it and remembering it! So glad you got a kick out of it...

I should get her to do her Happy Dance and take my camera and film it, then put it on youtube....!!

It snowed from 3 pm Friday to 10 pm Saturday..what do we have out there? Twenty five inches? It's been unreal!

T

Trill1943

Hi, ladies of BCO!

I'm sorry it's taken me a while to get back to such a helpful, supportive group of women who assisted me during this whole challenging time so unselfishly and graciously. I feel a heel for letting the days go by and not up-dating you. I found that I just needed some "lie-down time." (So I bought myself a Kindle and started reading once again..)

I saw my oncologist at the end of January and we had a thoughtful session. She went over my cancer and showed me a website that offers physicians and patients outcome estimates regarding therapy.

Through that I learned that for me, at 72, having the chemotherapy she recommended (C & T) would increase my life expectancy by 190 days.

NOT having it would shorten it by 1.6 years.

I know that this data represents a general overview of things and these numbers are certainly not determinant, but the details of my case--age, tumor size, type, etc--entered into the "prognosticator" were/are pretty specific.

A lot--a HUGE lot--has to do with my age.

At home I factored in the four-month therapy regimen itself--whose side-effects she said could range from mild to not-so-mild--and got a clearer picture of things and decided not to have chemo. Numbers just not inspiring enough to go through all that.

After I made my decision I talked to my 24/7 advocate, who, like me, is a triple negative and was offered the same regimen I was and after a lumpectomy and radiation had two rounds of chemo before discontinuing it. She then shared her experience--something she'd not wanted to do while I was still deciding--and told me how ill the chemo had made her (intensive care due to unabating high fever, terrible blood counts, still suffers from colitis.)

Another friend, on the other hand, said her chemo was so uneventful as to be forgettable.

I told the oncologist that I'd been 100% confident regarding my decision to have a double mastectomy and would only have chemo the same way--feeling 100% sure of myself. But the chemo facts left me just the opposite: not at all confident.

(One technique I used to help me decide was to "decide" one way and then live a few days with that decision, then "decide" the opposite and see how I felt about it after a few days.)

The idea of turning down a tool from the toolbox leaves me shaky at times. I hope this antsy-ness passes! Were I younger I'd probably go for the chemo. My 24/7 advocate was diagnosed at 55 and is now 59 and though she only had those two treatments has not had a recurrence.

Yep--were I in my 50's or 60's I'd do it, too...

So that's my latest...

Bye for now--and great health to all!

love, t (and Miss Pantaloon, who is thrilled that I'm going to be my old "normal" again...)

JBeans

And, great health to you too Trill.

You have the statistics to make the best decision for you; I think that you are brave and that you areinspiring in your description of how you came to your decision. (I'd have thought you were brave had you chosen the other path as well)

sandilee

Hi Trill,

I just wanted to pass along the information that you might be able to find cotton camisoles with padded inserts, which would be very comfy in the cold and just having had surgery. I wore mine for about six months, as I was kind of sensitive and bras just didn't feel good next to my skin. Just a thought. Good luck to you!

I really liked these. http://softeeusa.com

Trill1943

Hi sandilee and JBeans--

Thanks, sandilee, for the tip. Right now I don't have anything "there" but took the Jodee bra they put on me after surgery and stuffed in some quilting batting and that might do the trick when it warms up. Won't need it now that it's coat/jacket weather but come warmer temps will want something.....I love camisoles and used to have two nice ones but thought, well, I'm a little tired of these guys and pitched them. Now I'm very sorry!

JBeans, thanks for your nice words of support. ALL of this stuff takes courage and mental/emotional fortitude...I had no idea while I was in the midst of it how mentally exhausting it all was... I was so weary last week I couldn't even read the cartoon captions in The New Yorker--and that's pretty bad...

The best to you two and thanks again!

Love and hugs--

T

ruthbru

The mental stuff becomes the most difficult part. What is hard to do, but really important, is to acknowledge that each one of us has made the best decisions we could based on our own circumstances, philosophy, the medical recommendations at the time of diagnosis, and then never look back, no matter what happens, your choices were the right ones for you at the time.

Trill1943

Hello Ruthbru--

I always enjoy reading your posts and getting your perspective!

Yes--absolutely--that's how I felt going into my decision: that I would just make it and not look back.

Life's simply too short for that, and the whole business, to me, is accentuating the important stuff and letting go the rest.

Pantaloon's red ball bouncing down the hall and her tearing after it?

Important!

New Yorker cartoons getting their fair due?

Important!

Rumors of spring filtering through chatterbox winter's cold, rain, snow, ice?

Important!

Second-guessing decisions over to chemo or not to chemo?

Not so much.

love and a big hug,

trill

Praline

Trill and Ruthbru- You are both so right, A certain decision does not fit all. I too had to make a decision about chemo and no chemo. I too am almost 75. I read about it, prayed, gave it a lot of thought , sought the advice of my cardiologist ... Looked at how prevalent cancer is in my family. I had 5 brothers ( 2 have passed away) and one sister. All 5 brothers had/have some type of cancer. I decided to do chemo. I felt it was the right decision for me. Then I went to see my BS for my post op. And he proceeded to tell me how surprised he was that the oncology department wanted to do chemo for someone my age with the cancer I had. You can imagine my feelings!!!! I started thinking," Should I do this? Is this really the right decision?" I brewed over it for a week before I saw my MO again. We discussed why chemo was recommended again and I stuck with my decision to do chemo. I had my first chemo treatment last Friday and I will have a treatment every week for 12 treatments.

ruthbru

With your family history, Praline, I think you were very smart to do chemo. Surgeons know about SURGERY. The person who will give you the best recommendations on how to deal with, and hopefully beat, cancer is a good oncologist. Best of luck!

Praline

Ruthbru- Yes, I felt the same way, family history did influence my decision. And I know what you mean about the surgeon knowing about SURGERY. Ten years ago when I had open heart surgery I had a fantastic surgeon. But after the surgery, once I got back on my feet, his job was done. lol But I think the whole team should communicate and get on the same page before talking to the patient.

ruthbru

Yes, they should; but I don't think that happens very well in real life. I had radiation as well as chemo, and I still remember my radiologist saying very emphatically that if I had any problems EVER with that breast, to see him first. He said, "If you see a surgeon, he will want to operate & you need to rule out that it could be radiation after-effects before you do anything else." Apparently he had seen a number of women who had done the opposite & had needlessly gone through biopsies etc. when he could have put their minds to ease.

ruthbru

I think the doctors who are drawn to surgery are those who like their patients better when they are unconscious

Trill1943

Hi Praline-- Thanks for your words. Yes, now that we're in our seventies it's a whole different matter regarding what to go for and what to take a pass on. Congratulations that you thoughtfully mulled your decision and are proceeding based on that. Best to you over the up-coming weeks! They will pass in a flash.

Ruthbru and Praline-- (You two could be sisters) Interesting reading your postings back and forth. Ruthbru, love your final comment re surgeons. I don't think my breast surgeon was one of those but know for a fact my sinus surgeon was!

t

Trill1943

Hi ladies--

Does anyone know if the numbness fades at all where mastectomies were done? I think the numbness persists but am not sure..

And any tips for dealing with scar tissue? Massaging it good for it? Creams, etc?

Or does one just have to bear with these after-effects? That's what Pantaloon is telling me...

t

Janett2014

I still have numbness after almost two years, a co-worker still has it after 8 years, and my sister is still numb after 12 years. We all had BMX. Most non-BC people are shocked by that fact.

Trill1943

Hi Janett2014-- Hmmm....I thought so....the good thing about it is--at least for me--well, actually two good things--that I only really notice it when I shower....when I dry off I can't feel under my arm on the left--sentinel node area--or along the incision....

The other is that not being in a sexual relationship now--(still waiting for that call from Idris Elba)--sensitivity there etc isn't an issue (of course now watch him call! Isn't it always that way with men?).

You know, I'm very very glad I can joke like this--that's the best thing of all. These are small prices to pay for the surgical good riddance paid to bc back in December.

When i was having a p/t session at JHH in January--stretching and strengthening exercises--the therapist commented as I was getting dressed and mentioned something about the scar tissue that she "knew something I could do for that." I didn't think to pursue it but now think I'm gonna. If I learn anything interesting about scar tissue treatment I'll pass it on here...

If any ladies are reading this--hello and hope you all are doing well! Welcome Spring! (Any day now...yep, I'm sure of it...)

love, and thanks Janett2014...t

Janett2014

You're welcome Trill1943.

I wish I had better news for you on the numbness. Maybe other people have had different results. One of the weirdest things for me is the "phantom itch" that can't be scratched! It's very strange.

I agree with you that humor is one of the things that has gotten me through this.

Janett2014

ruthbru

Hi Trill! The site where I had my lymph node dissection is still numb 9 years later. So I imagine that it's a permanent thing. Ha!

Sounds like things are going pretty well for you. I have had an interesting couple weeks, a bad cold morphed into a case of pneumonia, so I have been pretty miserable and will probably be BORED to death before the medication ever kicks in (you know you are sick when reading sounds like an exhausting activity!).

Trill1943

Hi Ruthbru-- And when you can't proceed to the end of the (usually little) caption lines in New Yorker cartoons you KNOW you're in bad shape! (And shouldn't be awake at ALL when you can't even "read" to the end of the line when there IS no line--it's a visual-only cartoon. Then it's best to turn over and go back to sleep...) (This happened several times to me while recouping from surgery). So sorry to hear you have been sick....mentally picture me giving the bird to Mother Nature for this little "experience."

Janett2014---As yet I haven't experienced the phantom itching phenomenon....ooops, wrote that too soon! Here comes an itch right now....

t