CALLING ALL STAGE I SISTERS
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thank you so much for responding . It’s crazy how this breast cancer is so different to each one of us. I have aunts on both parents sides and cousins as young as 30 with breast cancer. My aunts are in their 60,70, 80’s. I worry too much or for the most part just want this done with. All this waiting drives me goofy . Also it’s unsettling when the doctors call with test results but tell you not to worry. I’ll get use to it as I go along .
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Lyndalysa...I think we all know exactly how you are feeling ..so worried over everything , especially in the early stages . I see lots and lots of people on this board who are stage 3 and many years out doing just fine ! How are your other family members going ?
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my Oncotype came back at 39. Next week they have me scheduled for chemotherapy on Wednesday. I get something called a port put in this week. Im happy the wait is over and hope the next four months go by fast.
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Lyndalysa- I'm sorry you're having to start chemo so quickly. There are other groups on this site, I believe one is for starting chemo in May. You may want to join that group, its very helpful to have support from those undergoing the same thing as you. Wishing you the best! HUGS
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Good luck to you Lyndalysa. ((hugs))
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Stage 1 sounds so lucky to have being easier to treat in most cases but it doesn't mean your out of the woods when treatment is over. Last June it was breast cancer & this May it is brain cancer! Please read my post under "recently diagnosed'. I need answers & im a mess
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Dear Badluck- sadly we are all in the
same boat- I feel terrible for you-
you have reminded all of us that there is NO cure- our cancers are “treatable” only- no matter
what out percent chances of mets/recurrence NO doctor has
ever told us that we have ZERO chance
of recurrence/mets
There is ALWAYS risk...
i cannot find your original post but
very much want to read it.
could you repost here?
Also- as shocking as this news is for you
- i have same stats as you and have just
finished radiation- and i wonder about
that dreaded mets risk that remains for
us all. Your situation could happen to
anyone of us- I would be dhocked
and mad and disappointed and knowing
me, I would probably rehash in my mind
everything i had done and what did i miss
which is a useless exercise because
you did everything right!!!... try to
tell yourself that if you have any doubt!
Second- is this a breast cancer recurrence
( met to brain) or a new cancer?
I have read alot of posts on here by
women that seem to fighting this
one with good success- the brain sounds
so shocking- but when i read abouthis gamma knife trestment it just sounded
so pisitive. Try to stay positive.
Every last woman on this site
could be in your shoes and we will help
you in any way we can0 -
Cassie - Thanks for some much needed answers!My rare but easy to cure breast cancer confirmed last June was enough for me to go through & now on a 5 year treatment plan of Anastrozole. At the same time I figured the cancer was growing, I kept complaining of the left side of my facial muscles tightening, twitching & pulsating. No doctor including a neurologist had an answer. Then this year on one of my 3 month visits to my MO I insisted that my facial muscles on my left side (same side as my lumpectomy) is related in some way since they come at the same time. I told my MO that I have a strong feeling that it's a brain tumor. She insisted that it wasn't & if it was then it would effect the opposite side of my face. I started crying & told her I can't go in living not knowing what the muscle spasms are. She then sighed & asked if I wanted her to order an MRI of my head. I told her she was the doctor & I'm the patient so please listen to me & I k ow it's a brain tumor. She ordered it & what did they find?! A large mass Meningioma tumor on my meninges which covers the brain! She said most of these tumors are found by accidents & they are common. Said she would just leave it there & do nothing about it since the risk of surgery is too great. Said many people with these tumors live a long prosperous life & die of other causes. This is just my luck!!!!
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Cassie -So then they sent me to their neurologist specialist in central WI & although my MO told me these brain tumors are all benign (non-cancerous), the neurologist I saw told me he hates the words benign because it's misleading & "ALL" tumors are cancer! He said there are fast growing they call malignant & slow growing they like to call benign (non-cancer). Again, he told me there is no such thing as a benign non-cancerous tumor! It through me in a state of doom & gloom. List all hope to live on. All my dreams gone. He gave me an option to monitor it or have something done soon. I told him I'd choose the option to come back in 6 months for another MRI to see if it grow more. He had no answer about my left side of my facial muscle tremors & told me that it's unrelated to my brain tumor. So does anyone out there have suggestions or know if I have metastatic breast cancer that is spreading? He kind of suggested that tumors grow out of control once you get one. Anyone have hope for me? Please help me find answers
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Hi again- so sorry you are suffering like
this - the unknown and the waiting
and the imagination can really mess
up the thinking!Soon, I am sure,
you will hear some input from others-
I know very little about meningioma
- but interestingly enough, after an
internet search- the common
fact seems to be that it rarely becomes
malignant- which to me sounds like it
cant be a distant seeding from your
lumpectomy- these 2 sound and read
like 2 unrelated events-it would have
characteristics of the tumour from
the lumpectomy- thats why a seeded
cancer from the breast that forms
a new cancer elsewhere eg: bone...
is often referred to as “ bone mets”
or breast cancer that has metastisized
( grown from a cell that has travelled
from its original site)
So on the good side- its not a cancerous
tumour that has travelled from lumpectomy site- your doctors describe
a new and different benign tumour- whether
its related to your facial issues seems
to be uncertain ?
It just seems to be a coincidence
- hopefully you can seek out a second
opinion fir the facial issues.
you are also advocating for yourself
and being proactive which is
reslly important. you are armed with
lots of information-
It is also quite possible that the facial
twinges are not related altho it may seem
to be a logical connection- i find
most doctors are the ones to believe-
even if we question snd insist etc-
they mostly know their stuff and seem
to have reassured you-?0 -
Cassie - thank you for your wise words & reassurance. I'm just so confused & scared. I feel like I'm in a dream & this just can't be happening to me. When that neurologist was telling me all tumors were cancer he also was indicating to me in his drawing how tumors start & then metastasize & spread to different parts of the body. I was guessing that he was telling me that maybe my breast cancer developed from my Meningioma tumor in my head since it looks like it's been there for a very long time & looks like it's starting to calcify. My MO said she would just not do anything & just leave it there. Claims that many people with these tumors can't live a long prosperous life. I think she just didn't want to tell me about the terrible risk of having the surger
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Hi- i am very intrigued by the doctors
supposition that the breast cancer
may have “ seeded” from the benign
brain tumour. When i was diagnosed
with breast cancer, the first question
i asked , was whether this cancer
started in breast or came from somewhere
else- they said that the characteristics
of the tumour are specific to breast
cancer origin only- in other words,
if i get cancer elsewhere in body,
they can tell if its “ new type”
or the same as the one in breast-
if its same- that means a cell(s)
somehow got left behind ( thus
need for radiation and adjuvant therapy)
and “ grew” at new site.
I must be missing something because
it diesnt make sense to me that
you have a current benign brain tumour
with different
characteridtics than the breast tumour-
that makes no sense to me-
if they are the same they would have
same traits and they dont.
If the doctor has told you they are
different tumours- how can
it be pissible that the breast cancer
“ seeded” from the benign tumour-
they’d be the same- is there a way
to test for the characteristics of
benign brain tumour?
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Hi Cassie - you sure got me in your questions. I didn't know what questions to ask about my newly discovered tumor in my head. My MO said she was 99% sure that my Meningioma tumor was benign as the majority of them are. But she thought it was best to send me to their neurology/oncology specialist in central WI., to look at the MRI results & see what they suggest I do with it. She told me if she had one she would just leave it there as long as it wasn't causing any problems. Told me I could live a long prosperous life with it & die from another cause. But this neurologist she sent me to threw me in a state of shock! He was very cocky a short well! The last question he asked me was "any questions or concerns?" I asked if I should get another opinion & if he could refer me to Mayo. He didn't like what I asked & said Mayo can't do more for you than we can
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Badluck (I'm going to call you Good Luck from now on to distract those bad vibes way from you!)
Sounds like you should definitely seek a second opinion! Don't let your doctor discourage you from doing that. Very unprofessional of him to do so. If he were confident in his opinion, he'd be happy to have it confirmed by someone else.
Be strong!
Anne
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Hi - i agree with piperkay- get s second
opinion ( neurologist)!!
Your MO is reassuring you
that the brain tumour is benign- So, it
really strikes me as odd that your
neurologist is stepping on her toes
by saying there is no such thing
as a benign tumour- all tumours are
cancer”- like- wtf ?
so no wonder you are confused!
Can you relay this info back to the
MO? Perhaps she could suss out
another neurologist fir a second opinion-0 -
Supposedly, DCIS is benign. That is what staging at 0 means-- non-cancer. Cancer is that which has invaded other tissue-- therefore invasive. Of course, since the brain is encased in a hard shell, there is no-where for healthy tissue to expand to when under pressure from unhealthy tissue. When I had my breast biopsy, even with massive amounts of whatever kind of -caine it was, the pressure inside the duct they sampled from was such that I screamed-- I was trying to sing, but it didn't come out that way. Now we know that there was a small part of that non-cancer that had turned invasive-- therefore cancer.
It is all a bunch of double-talk.
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DCIS is NOT benign. It is cancer. It has not invaded surrounding tissue. Abbreviation for: Ductal Carcinoma In Sutu. It is confined to the duct only. IDC is: Invasive Ductal Carcinoma....it has invaded surrounding tissue and gone outside the duct.
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I agree keepthefaith. DCIS is cancer.
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I don't disagree. However, some think otherwise. See my experience. It depends on size and grade; invasive cancer is sometimes hidden within DCIS tissue. Nothing to take lightly when it is large and high-grade. Calling it a non-cancer is inviting people to take a wait-and-see-attitude.
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I have never heard that DCIS is not cancer, thus benign. It is often high grade, aggressive and large in size and probably nothing that should be minimized in importance. The friends that I know who have been through this have received the same treatments as I had. Lumpectomy or mastectomy, radiation and hormone blockers if ER and PR poistive.
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One can have early DCIS, difficult to detect if calcifications are sparse and evenly distributed. It may, or may not, turn invasive. In fact, as people grow older, they are more likely to have small encapsulated slow-growing pre-cancers in more areas of the body. LCIS is often allowed to remain untouched, as it usually grows slowly.
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Decades ago, when I had my first call back for biopsy, the discussion was that what was seen on the mammogram could be DCIS and the treatment would most likely be watch and wait as it was not invasive.
We have come a long way since then ... And it turned out then that the imaging center had new equipment, the radiologists were still learning about reading the images, and there were lots of benign biopsies! That experience kept me from being too anxious about last year's biopsy, until I heard the mass described as having an irregular edge.
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My ultrasound bx revealed IDC/ILC and had first lumpectomy. Invasive Ca at margins meant another lumpectomy or "revision" lumpectomy as BS labeled it. DCIS was found in this revision and was present at < 2mm so radiation boosters were increased to 9 of 34 treatments and total Gray exposure was 60. RO said that this could have been 10-11 boosts if DCIS was positive at margins. So a dx of DCIS should not be taken lightly. Make sure you get the whole story at the time of dx. It took me 2 years to get the truth about my radiation experience and I mistakenly trusted this RO. Not anymore.
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A friend of a friend saw surgeon, told "only DCIS" it won't kill you. Had LX, turned out she also had IDC. Then had to have a total second surgery to check nodes - with one showing "a small met."
Needless to say this surgeon is scratched off our list. No one can tell without the pathology.
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"A friend of a friend saw surgeon, told "only DCIS" it won't kill you. Had LX, turned out she also had IDC. Then had to have a total second surgery to check nodes - with one showing "a small met."
Needless to say this surgeon is scratched off our list. No one can tell without the pathology."
Exactly.
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Back again. Just diagnosed with DCIS in right after IDC in left in 2012. Darn.
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Belinda, That sucks! I’m curious if you’re still on HT or did it happen after you did your five years? I’m so sorry this has happened to you again. Let us know the plan when you get one.
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Still on Tamoxifen. He is going to switch me to a AI once my periods stop.
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Belinda, I'm so sorry to hear this news. Please keep us updated
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Belinda, keeping you in my thoughts and prayers
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