Just need to talk

fortunate1

Debe; You are getting wonderful advice from these marvelous ladies. I can second it all. I found it especially helpful to have my husband there taking notes. I asked lots of questions but had trouble keeping any of the docs answers in my head. I also had an MRI and CT/Pet scan to figure out what else might be in there. The different doctors weren't working together very well and it was the Holiday season, so scheduling was my particular meltdown problem. That, and- "what do you mean it doesn't show on the mammogram?"

I agree with Kleenex, you're in the hardest part, it will get better. Be patient with yourself.

Seabee

Debe, yes, as other posters have indicated, it's routine to order these or similar tests to get a clearer idea what is or isn't going on. I was amused by Kleenex's story, because I had a CT scan, bone scan, and breast MRI all in the same day, and I also freaked out, though in my case it was the bone scan, in the middle of the schedule, that got to me psychologically. After that they told me I could have lunch, so when I got to the MRI I had simultaneous trouble with a tremor (neurological problem), uncomfortable arm position (arthritis), and acid reflux (lying on stomach).  They had to stop the test briefly to give me a chance to regroup. I definitely don't recommend doing more than two tests in one day, and in some cases it appears that two may be more than is advisable.

Kleenex

See, this is the magic of breastcancer.org - you find other people who totally get the freakish things you've had to go through, and then later - when "tragedy + time = humor" at last, they get that it's almost funny...

Seabee, thank you for feeling better about MY day of fun testing. Although for my breast MRI's, for some reason my surgeon sent me to a facility 45 minutes from my house and they did one breast at a time, on separate days. First breast: 1 hr 25 minutes. Second breast: a quick 45 minutes, comparitively. Which is why I felt so good about my "we don't see anything but the original tumor" thing - I had seriously detailed MRIs...

Gitane

Geeze, Kleenex, you must have had thousands of pictures taken during that MRI, the worlds most photographed boobs! Mine took about 45 minutes doing them both at the same time.

Seabee, they put you through a lot.  Your MRI did not sound good at all,  tremors pain and acid reflux.   I feel lucky that mine was uneventful.

There was a hitch in my testing, too.  Something lit up in my "good" breast so a week later I had to go back for an MRI guided biopsy.  Stupid me, I thought it was going to be like the core biopsy I had before, which wasn't bad.  The MRI guided biopsy was painful.  They literally held me down.  Did they not wait for the anesthetic to kick in?  Anyway, I was white as a sheet and shaking all over when they finished.  I was there alone, and had to drive for 30 minutes to get to my next test, a MUGA scan of my heart.  Never occured to me at the time how that was not a wise move. I was probably a bit in shock or something.  My MUGA LVEF was 80, which I have since learned is high.  I've always wondered since if it was falsely elevated due to stress. 

DebeDawn

Wow you ladies are great!  The doctors tell you stuff , but it is so cut and dried. I think this forum is going to keep me sane through the coming days.  You have been through so much and  yet you all seem to have kept your sense of humor..and smart.  You are all right though I haven't had my melt down.  I am trying to stay strong and optimistic for my family and I do that with humour - they all think I have a very sick sense of what is funny.  But no breakdown allowed yet as my daughter is turning 21 on the 30th of this month and I don't want her to birthday to have a cloud over it.

 My husband is very suportive and does the rounds of tests and doctors with me but come surgery time I know he will be a basket case.  You may think I couldn't know this ahead of time, but he picked me up after dental surgery a couple of years ago, and when he saw the "Machines" I was attached to (you know the little thing on you finger for blood pressure readings) and heard the beeping, he passed out, hit his head on the way down and was sent to the hospital in an ambulance with a concussion.  I had to find another way home.  The dentist has marked my file that he is not allowed to pick me up anymore.  He laughs with me about it now but I think I will plan a couple of friends to come just in case.

Its funny how quick word spreads in my family (my dad and brother are in West Vancouver BC)and within 2 hours my cousins in Toronto were starting to phone to tell me how sorry they were, and their "I had a friend, cousin, etc. cancer scare stories although we probably haven't spoken for five years (no problems we are just not close).  I had to ask them to stop as I only want "UP' people around.  They were as bad as the worst labour and delivery stories that women tell pregnant women.  You ladies are the first place I head to when I get up and it makes the rest of the day easier.

 I even know what staging means now.

Thanks for being here for me and all the others to come this way.

Debe

Anonymous

Hey, ladies - I'm kinda new here - at least on the ILC thread.  Just thought since I've been following your posts that I'd chime in and say, "hey!"  I didn't have the battery of tests that many of you have endured, so you are all heros in my book.  Mine was caught early on routine mammogram - for some reason presented as a mass, not the usual "sheets" that are typical for ILC.  I'm now in the middle of expanders and 3 months into tamox. 

DebeDawn - hang in there, girl!  Our husbands are a precious source of support, but I know mine was completely spent by the time I was about 5 weeks post-op.  They endure this cancer experience in a very real way, too.................

Kleenex - I'm your norther neighbor up in ft. worth!

Valerie

Seabee

Gitane--It certainly sounds like your breast was not completely anesthetized. I had a nasty experience with a core biopsy for that reason, but they didn't try to hold me down. After the first bad zap I threatened to leave, so they gave me more anesthetic. The next one was tolerable (just pressure, as advertised), but the last one was horrendous. The doctor stopped trying after that one, though they usually take more than four samples. He was probably afraid I'd make good on my threat to leave if he attempted another one, but actually I was still too dazed to resist. I don't intend to let anyone armed with a vacuum assisted core biopsy gun get anywhere near me ever again, however.

Yes, husbands and other partners or caregivers have a hard time also, and rarely get much credit for it. Every now and then I try to let my husband know that I appreciate what he does or offers to do.

my560sel

Debe - So sorry to hear your news. The ladies on this thread are very knowledgeable and helpful. If you have any questions or are unclear about anything , just ask. I was Dx with ILC 1.2cm and after having a lumpectomy they found it was only .9cm. I was scheduled for radiation but have since decided to undergo a BM. I dont think I could stand the pressure from  constant surveillance the rest of my life. If you have insurance, you should have the ONCOTYPE DX test done to find out your reccurance score. Take one day at a time, try to read as much as possible about this disease and arm yourself with the material you need to make the decision that are right for you.

Remember, this is all new to your husband as well. Being able to "fix things" is in the male genes and he must be just as scared/confused as you are since this is one thing he cannot fix. Bring him along to all your app'ts and have him take notes as it will all be overwhelming to you in the early days of diagnosis.

Terri

Kleenex

I think that it's not just the whole "I can't fix illness" thing that bothers men, I think it's also the strange nature of breast cancer treatment in general: nothing is really definitive. At every step it seems there are OPTIONS. "You appear to have this tumor that's probably a little less than 1 cm. You could choose to just have it removed with lumpectomy, or you might want to have us take off the whole breast, or you might even want to have both breasts completely removed. What would you prefer?" That sort of thing drove my husband nuts - I think with the first surgeon, he left thinking she was an idiot that didn't know what she was doing, because of the lack of a clear presentation of "this is what you have, and this is what you need to do to take care of it." And then as time wore on and he saw that they were ALL like that - well, he was still not happy, but at least he "got" that this was BreastCancerLand.

DebeDawn - it might be good to know that your husband will probably have issues with your surgery (loved the description of the little finger blood-pressure monitor as a "machine") so you can provide him with backup... I'm also proud of you for saying, "STOP!" to people who share horror stories - many of us just listen and end up with these horror stories transferred into our brains permanently.

Gitane and Seabee - you are reminding me of how each new "test" presented its own horrors. I made it to 45 with virtually NOTHING done to me. I'd had maybe two IV's in my life, both while giving birth. So each new thing was fraught with stress. Somewhere on these boards I described MY "vacuum assisted ultrasound guided biopsy" fun, and it sounds like we had a similar time, Seabee. They numbed the area where they went in, but the area from which they were snatching the tissue was NOT numb. The radiologist (gunslinger) and his nurse (sidekick thug) kept saying, "Oh, hey, sorry, sometimes it's hard to numb that area, but this next one will be SO much better, since we've already established the pathway." Which was a bunch of crap. After three samples had been removed and the radiologist made me look at them ("I got GREAT samples. If they can't tell what this is from these samples, well, it's because the tissue isn't clearly identifiable. Wanna seem them? These are GREAT!"), they tried to get a mammographic image of the area to admire the metal clip they'd put in to mark the spot. I really believed that wasn't necessary - I testified that I truly believed the clip was in there, because I FELT it as it entered my body at 70 mph, but oh well.

I think I've signed on for a future of appointments with gunslingers by keeping my breasts, but next time, I'll be prepared with perhaps a Xanax in the bloodstream and a bitchy attitude. If it's not numb, no one gets to touch it, period. And I can't imagine someone holding me down! OMG!!!!

And we have such wonderful empathy now - if someone had said to me before, "I have to have a biopsy," or some other procedure, I wouldn't have had a clue what that might be like for them. I don't want to scare people - but I'm very fond of the Girl Scout credo: Be Prepared! And I also believe that Knowledge is Power.  Just because someone else had a bad time doesn't mean that I will, but I'd like to really know what to expect so I can prepare, and if someone else wants to know, I'm happy to tell them.

my560sel

Kleenex: When I went for my core biopsy they made "the path" as you say but went in 8 or 9 times each time saying"sorry, I hope I'm not hurting you" or " You're a strong person, hang in there it won't be much longer". They could not for the life of them get a good sample so then I went from that room into another room where I had an MRI guided biopsy. That's the fun one where after having poked you 8 or 9 times they have you lie down on your stomach with your boob hanging through a hole in the bed. They then proceed to poke me another 8 or 9 times by the time it was finished. Then they inserted the small piece of titanium and of course, I then had a mammogram to add insult to injury! I was in there for 1 hour 45 min total and almost in tears by the time I got out. Makes you wonder sometimes......

In between the lumpectomy and my re-excision surgery, I had an MRI to check my other breast (they did both actually). They saw something on the other breast and something else on my cancer side. I had to go back for an US to verify what they had found. Again, I get the same tech/Dr doing the US and of course, after several tries in each spot, she can't see anything!! That's when I decided to go through with the bi-lat mx!! I don't think I could go through the constant testing, checking, re-checking and possible biopsy ever again. 

Terri

Firni

Hi ladies, I was diagnosed with ILC 9-9-08 in my left breast.  The only tests I had were the core biopsy, MRI of both breasts and an oncotype.  No one ever ordered any other scans for me nor does my onc do any follow up scans.  I had bilat mast and 6 rounds of chemo. ad am now on Tamox.  But should I be concerned about not having any scans done?

angeljoy

Firni,

My oncologist is appparently not the type to order scans prior to starting treatment either. He said that's because if there is any cancer elsewhere, them chemo they would give you would treat that as well. It just seemed to me you should know everything you could before starting treatment, so I expressed concern over not doing scans and he told me if I wanted scans we could of course do them. And we did. I suspect he doesn't do follow-up scans as a matter of course either, but as there were a couple of benign-looking things noted on the first scans that should never-the-less be followed up on, we do them as well.  I'm sure docs have different opinions on whether or not scans are necessary, but if you express concerns I think they should do what makes the patient comfortable. Best of luck to you!

Angela

Kleenex

Wow, Terri - I can see how you'd want to opt out of future torture sessions. Only time will tell if I really did make the right decision to hang on to the boobs. Really, though, aside from my one little experience with this biopsy (of something I found myself, that was imaged on a sonogram but outside the area of the mammogram), I have never had any other scares or even second glances at any of my breast imaging. I hope I'm good for 10 - 15 years at least. We'll see!

And tomorrow I go for my annual gynecological exam, which should be interesting. It was originally my cervix that I thought would try to kill me. I'd just graduated back to annual exams after a few years of close monitoring of wacky cervical cells and two procedures to remove some. So let's all hope that all is quiet on the cervical front, because I really don't feel like giving up any more body tissue just yet... 

Gitane

Fimi,  Bone scans and/or PET/CTs  would be done before surgery and treatment if the oncologist had reason to believe there might already be metastatic spread. (for example a big tumor, high grade, positive nodes)  At least that is what I assume since I had a PET/CT. Yours was small, and you had negative nodes, too.  Your oncologist probably felt that any scans were over doing it.  If you want them, however, you probably could get them just by asking.

Seabee

Angela--Your onc sounds just a little bit complacent to me when he says the chemo will take care of any spread, It depends on what kind of tumor and what kind of chemo are involved. I'm not sure knowing what's there is all that helpful, but at least you know what you're dealing with, and that can impact the choice of treatment.

nash

I agree with the others--if by chance you are Stage IV, you'd want to know that going into chemo so you could have a baseline to which to compare future scans. The main way to know if chemo is working for Stage IV is to see if there is tumor shrinkage. Even if you're not Stage IV, you'd want a baseline, in case something came up in the future.

Colleen--hope your GYN exam went well and that your cervix is behaving itself.

Firni

My onc doesn't do scans because they present too many false positives and then there are biopsies and worry and expenses.  He felt pretty sure that I had no cancer left when I started chemo.  But how do you ever know soon enough if there has been mets to the liver or brain or where ever?  From what I understand, by the time you have symptoms, the cancer is usually pretty advanced.

my560sel

Kleenex: Hope your gyno app't today was 'uneventful". You absolutely don't need to be going through something on that front after all you've been through!

Anxious for my 2nd app't with PS tomorrow...have many, many questions for him.

Terri

Seabee

My breast surgeon also ordered a CA test, which she never mentioned to me, even before surgery.  It was decidedly negative. The test is not overwhelmingly reliable, but it agreed with the results of other tests which suggeseted that the cancer had not spread  beyond the breast and sentinel nodes.  I would have appreciated it being mentioned. If you think a test is worthless, why order it?

Kleenex

Thanks to all who wished me well on my lovely annual gynecological exam. It was mostly uneventful - except that the doctor detected a slight yeast infection. I must say that I was surprized, because despite the wild, ever-changing range of discharges and itches and dryness and whatnot I have experienced while taking Tamoxifen, I really felt that he was seeing me on a rare normal day. Who knew I was secretly harboring extra yeast growth?! I felt pretty good.

Interestingly, although I supposedly don't have to worry about Tamoxifen and another med I take messing up my liver - I'll be just fine - at the same time, he didn't want me to use the oral yeast medication because THAT apparently would be the straw that breaks my liver's back. Hmmmmmm. I almost called back today and asked him to reconsider. I really, really hate those little tubes of Monistat cream (or whatever it is). Bleaugh.

Now I just have to wait a couple of weeks to see whether my cervix is up to anything

It's interesting to see how different doctors deal with the issue of scans. When mine were first ordered, we knew I had ILC and it seemed to be low grade, and I'd had MRI's to see if there appeared to be any more of it, and we were thinking it was perhaps about 1 cm or so. I wasn't told if they suspected it was in my nodes. Anyway - to me, it wasn't that it was a particularly large or aggressive tumor: they told me that they just needed the scans prior to surgery to "make sure everything was all right for surgery."

Seabee

Kleenex--I agree re. those nasty little tubes of cream. I long ago put them on my  "the cure is worse than the disease" list, along with that goop my PCP gave me for dry eyes, which makes it impossible to see clearly for hours.