~* The Waiting Room *~
Comments
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Hey everyone, thanks for your kind words, and encouragement. It really helps being able to talk on this website to women who know what I am going through.
Lexislove, No I did not have rads, so that is good. The doctor told me on Friday that the tumour is getting into my muscle now, I am having a hard time lifting my arm without pain and restriction from my where my tumour is. It looks like I may be doing chemo and rads to shrink the tumour before they can operate. This is a regional recurrence, so hopefully, as long as it just stays in the nodes below my collar bone I will be ok-and as long as the tumour shrinks. I had a few weeks of depression, but I am ready to fight now! I just want to get started on my treatments ASAP. When I saw the surgical oncologist on Friday, he did not have the results back from my CT scan, what a surprise, waiting yet again. I am pretty sure I will know this week exactly what happens next, I am really hoping I start my treatment this week.
Take care to all of you who are waiting for results. Hang in there, sending lots of positive vibes your way!
Kristian
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Kristian - I hope you get news on your CT scan!
Take care and I hope the pain subsides! 0 -
Hi Everyone
I go for my bone scan this afternoon. I have been really achy (spine) since finishing my Taxol (which really was havoc on my body) thought is was remaining residual chemo. Now I am wondering maybe "I had progression (bone mets) while undergoing chemo". I can't help but to think this has been this case. I am trying to keep positive but then reality kicks in as the Dr. wouldn't be "holding of my local rad treatments-to order a bone scan as they did find 2 "uptakes" on my T5 & T11. I have a "pressure" kind of feeling in my head-guess what I am thinking...Ughhh
Weety-Glad it turned out B9!!!
Kristian-Sorry to hear the news. No body wants to go thru this again but as Lexi writes a local reoccurrence is highly treatable! Hang in there!!! Hoping your scan comes back good news.
kittycat/Jenniferz-hoping for B9 and that you get answers quickly. The waiting is horrible.
Frankie
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Frankie - I hope you get through today OK. I will be thinking of you.
Kerry
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Frankie,
Thinking of you and sending my prayers your way today.
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Hello Ladies. I was diagnosed with IDC on 3/12/2010. I have posted a few times on the Class of 2010, but have mostly been searching the discussion forum and reading about everyone else and their experiences. I am having a lousy day-weepy, and depressed.For the most part I have been up and positive as I wait to have surgery. If you will allow me to post the details of my journey so far, I would love to hear any advice you can give me. It was initially thought the mass in my left breast was about 1 cm. After an MRI, then MRI guided biopsy, they found more ca in the form of DCIS with some microinvasion. Initial mass was then estimated at 4.7cm. Mastectomy is my only choice. The good news is that it is PR + and HER2-. However, the dcis they found and biopsied came back as PR-. I asked the surgeon what this means and her answer was that there may not have been enough of a sample and sometimes cancer that extends out from the initial mass can look a little different initially. Have to wait until the final pathology after surgery which is scheduled for May 7. MRI on the other breast shows an area approx 6 mm that is probably an area of increased glandularity, but an MRI is recommended in 6 months to follow up on that. I hate the word probably-but what can you do. Over the last 4-5 days I've been contemplating having a double mastectomy. I'm 48 with four kids ages 11, 10, 9, and 7. I do not want to go through this again, although I know a mastectomy doesn't guarentee that the cancer doesn't come back in the small amount of tissue remaining. I havent even seen the onc. yet. I did have a SNB on 4/7 which showed 2 negative nodes-good news again, but I don't trust it. I have had a gut feeling since my original biopsy by ultrasound and haven't been wrong since. I have an appnt with the surgeon and plastics this week to talk again. I was planning for TE on the left with the May 7 surgery. My only family history is my Dad's Mom who got BC after age 70, and lived to be 91.
Everyone I talk to about this listens but of course state "Well, it's going to be your personal decision", which is really not helping me.
Sorry this is so wordy and scattered. If anyone has any advice let me know.
Thanks
Laurie
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Laurie,
Your diagnosis is still fresh. Really...really fresh.
I did chemo before surgery, 6 months of heavy chemo. All I could think about during this time was, "what are the docs going to find (path report). For 6 months I prayed that the chemo was working. I cried daily. It was a very dark time for me.
I remember coming home after my mastectomy and having a huge sigh of relief that the tumor was gone. To be hones, I cared less at that point about the path report. Just as long as the breast was gone. I had a single mastectomy, had no choice....my tumor was almost double than yours (8cm).
Got my path report 3 days later, and my prayers answered. Small amount of residual tumor left with DCIS and no nodes positive. I remember my surgeon saying to me, with my size tumor the chance of having + nodes was around 90%. He told me he has seen large tumors and no nodes, but it is not as common. At my follow up appt after my mastectomy, he was examining me and said " well...looks like you were part of the 10%." I didn't know to smile or cry. I later cried in the car on the way home.
My point....don't assume the worse! This board is great in so many ways, but sometimes when you are "freshly" diagnosed it can be scary. Everyone has their own stories. Everyones cancer or diagnosis is different. You may read about someone else....same size tumor, Er status, did the same chemo...ect...and they have progressed. You can't compare yourself to others.
As for removing the healthy breats.....<sigh>
There is no rush. Please...please...look at YOUR personal risk of developing a BC in your remaining breast. I decided NOT to remove the healthy breast. Why?
#1- I tested negative for the BRCA genes
#2- My aunt on my dads side had BC in her 60's (died of Alzheimers) thats it.
#3- I'm ER+, and having my ovaries removed. Will be taking an AI after 2 yrs of Tamox.
#4 - I watch what I eat, and get daily physical activity (reduces BC recurrence)
And last.......my onc gave me a risk of 20-30% chance of developing BC in the healthy breast. So, 70-80% chance I will never see this again. Those odds? I can live with.
I'm glad I had the 6 months of chemo first before my surgery. It allowed me to really think about removing my healthy breast. I thought about it a lot. I'm happy with MY decision.
If you know the anxiety of future mammos is not worth it? Then maybe removing the healthy breast is a good choice. Again....it is your decision. The docs do not have a crystal ball. We hope for the best.
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Hi Everyone:
Just got the call from the RAD ONC's office and his nurse told me things are CLEAR!!! I started to cry immediately and still am! She told me that the bone scan came back clear. Of course I had so many questions...
What about the rib? She said that there is a vague shadow in that area but the Radiologist reviewing the scan feels it is a slight fracture scar-and that's it. No uptake on the T-5 or T11-Nothing else either. I kept questioning her but what about the CT Scan done on April 9th and what about the pain I am feeling in the rib area and lower back (tail bone)??? She just kept saying this is good news. She must have thought "What's wrong with this girl?" This damn disease takes such an emotional and mental stress on us!!!!!!!!!!!! You all have been so kind and supportive. I don't know what I would do with out my friends here. Thanks you all so much
The nurse is now trying to get me in ASAP to start my local area rads-which were put off hold (while I was waiting for this bone scan).I have decided to take a break from bc for awhile. My mental and emotional state has not been very stable lately and I have been pulling away from my friends who do not have bc, plus my husband tells me I am on the computer (especially) this site way too much and he doesn't think it's healthy and that I should be out "living" as he puts it. He likes that I have this site BUT feels that bc has consumed me. So for now, I will be getting some much needed fresh air and getting things done that need to be done around home before going back to work in September. Plus I want to try and get more into fitness as I have been very INACTIVE since chemo and my bones still ache and are stiff and I need to re-train my body!
Love you all
Frankie
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OMG, Frankie, I am just so thrilled for you! I saw your post and I was almost too scared to click on it. What wonderful news!!
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Frankie!!!
Today is a good day. I'm so glad for you
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Yay Frankie!
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Delighted for you Frankie!!!!
Good wishes to all those still waiting !! xx
Tricia xx
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Frankie - I'm so happy you received good news. My sister had something similar (pain on her chest wall). It ended up being NO CANCER - thank God. I'm so happy for you!
I had my surgery today. Got home a couple hours ago. I was in some pain, so I took a half perc. The BS removed 3 lumps. Now I wait for a couple days for the path report - the worst part. I'm so glad the masses are out. I'll keep you posted. We need some entertainment in the waiting room! LOL!0 -
Phew, good luck on the path report Kittycat!!!
I agree, maybe some magazine's, coffee and soft music lol.....what do you suggest???
Tricia xx
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The first part of waiting is over. Unfortunately, I have cancer again. Yes, after having a bmx for DCIS. I don't really understand how that can happen, esp since part of it is invasive.
So, now I have to get a sentinel node biopsy and a petscan (that's after I heal from surgery). More waiting....0 -
Kitty!!!
I'm sorry about your news...but like I mentioned to before, a local recurence is highly treatable. I recommend hiting this beast really hard this time. This BC sounds angry. Perhaps chemo? Definatly rads.
I see your previous diagnosis was TN. Is this recurence TN as well? I do know than TN Brca 1+ cancers are very...very aggressive. Most are basal cell type.
Let us know what your docs say.
Edit: I don't know much about DCIS and recurence, but maybe you can PM Beesie. She is a wealth of info for DCIS ladies!
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I think it is basal cell type. I'll know more when my path report is complete with the hormone markers. It has to be a really angry cancer to come back so quickly and in mutliple locations after at bmx. My sister also thought chemo might be the answer. I was referred to a rad onco by my regular onco.
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I don't know if I'm positive or negative for HER2. It was not on my bmx path report.
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Uh huh....
Ya. Angry...angry cancer. If its multi focal (different spots),l I think they would recommend chemo. But, then I'm not sure.
Kitty,
Don't mess with this throw everything at it.
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Yes, it was all in the same area - 9 o'clock on the right breast, but multifocal. My original bc was also at 9 o'clock on the rt side. I am really scared this time. Very scared!
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<sigh>
What a flipin' nightmare. I'm so...SO...sorry. Anyone would be scared. Your right to feeling this way. I just had a major scare myself. There is nothing easy about this stupid disease.
Ask questions and maybe even get a second opinion if you think your onc is not being aggressive enough.
Keep in touch...k?
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Thanks lexislove!
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Kittycat, I was so sorry to log in and see your sad news this evening. I agree you'll know more when you get the full report but as it's so aggressive it may well be her2+ this time in which case you'll have extra treatments to fall on to help you.
Do you know if it's a new cancer or a recurrance?? I was reading an aritcle by Dr Susan Love who states most early local recurrance's are due to being missed at the initial surgery.
Please keep us posted, and while it may take extra treatment this time, you'll beat it down and get through that I'm sure as many of us did:)
Love
Tricia xx
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Tricia - it's in the same area (9:00) on the right breast, where my DCIS was found. I'm thinking some cells got left behind and it formed into cancer. It's too coincidental.
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Kittycat, So sorry. . . I know that my mastectomy left some DCIS present at the margins (even though the actual invasive part cleared the margins) but I had to do radiation not because of the IDC, but mostly because of the DCIS. Hopefully you've caught it and they can do chemo and/or radiation. Cancer sucks. I'm so sorry. It's just not fair.
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Weety - cancer does suck!!!
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Kitty I'm so sorry and I agree, it does sound like some cells were left behind::(
As other's have said, a local recurrance while no picnic is treatable so try to look on the bright side that this was'nt a distant one.
I know it's not much consulation though in having to go through this:(
Please know we're all thinking of you and will help you though it.
Tricia xx
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I'm baaackkkk....
Hi ladies, it seems I'm back here again in the waiting room. I wish this was not the case. Okay, so I gave you all an update on April 27th. My bone scan (April 26th) came back clear from a "follow up" from a Chest CT Scan (April 9th) that found 2 "questionable" spots on my T5 & T11 that had "uptake" in these regions. I met with my medical Onc on Tuesday for my 6 week check in and asked him why the bone scan came back clear and the Chest CT Scan showed 2 new "questionable" areas.. Of course I am thinking it's great to have a "clear bone scan" but wondering in the back of my mind which one is "valid ?" He explained that when the CT Scan takes pictures it is cut into very small sections. For example: if the films were sliced into 7mm sections and if something was undergoing to the bone (arthritis, degenerate changes, bone mets) and were small enough in size -4mm then the film that was cut into 7mm would not see a 4mm (change). Therefore, resulting in a "false negative". I had my first (baseline) chest Ct Scan in November /09 at the time of my initial staging. The second CT Scan on April 9th (when the 2 spots were seen). So depending on where the film was cut into sections and/or if bone changes increased (over time)-things can now be seen that weren't on the previous CT Scan. So then I asked what about the bone scan coming back clear. He said that it could be a "false negative". Not what I wanted to hear! I felt like I was being "kicked int he stomach -AGAIN". I thought that I was in the clear (as the Rad nurse) told me that the "clear" bone scan was good news -when I questioned her about the conflicting CT Scan results. My Onc went on the say that "he did not think the 2 "questionable spots" found on the chest CT Scan are cancer related but probably "degenerate" in nature but reminded me that he could not be certain it wasn't cancer either. I feel like I 'm back to square one. He said that he will order another CT scan and bone scan in 3-4 months to take another look. He said in the meantime we take the "wait and see approach" and that I continue with treatment -receiving herceptin. Guess I'll met back here in 3-4 months time. Well let's see I 'll be back in July with the "redo" pap test (follow-up) from January Urghhhh
Frankie
Edited to check-spelling
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Ohhhh Frankie, not more waiting for you. Easier said than done, but listen to your doc who thinks it's probably not cancer-related.
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Frankie,
I had to do the long wait and see approach too for the spot on my spine which showed on a bone scan.
It turned out fine eventually and hope your's will too, in the meantime try to assume it's neg and enjoy your life as to do otherwise will drive you nuts!
Sorry you're waiting again.
Tricia x
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