To All My Stage III Friends
I don't post as much as I used to, but those of you who have been here for more than a few years will probably remember me. I found these boards so very helpful during my second BC dx in 2005 and for several years following active treatment. I tried to contribute when I could to the Lobular, Stage III and Lymphedema forums and I still visit them from time to time.
My reason for this post today is unfortunately to let you all know I will be returning on a more frequent basis due to a progression of my disease. I won't go into details here because I do not want to upset or add to the stress of those newly diagnosed Stage 3'rs. In fact I would like to emphasize to those who feel a Stage 3 dx is the end of life as they know it....I am proof that is absolutely not the case! I am almost 14 years out from my first BC dx and am 8 years and 3 months out from my second dx with 23/23 positive nodes. My life definitely has not revolved around cancer these last many years and I have greatly enjoyed taking on new hobbies, skills and adventures. Please do not lose hope for a full and rich life with a Stage 3 dx!
I still plan to hang around here from time to time. For those who wish to keep track of my new status you can view my post today at this link in the "Just Diagnosed with a Recurrence or Metastasis " forum:
https://community.breastcancer.org/forum/106/topic...
Dx 7/14/2000, IDC, 1cm, Stage IIa, Grade 1, 2/7 nodes, ER+/PR+, HER2-
Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2-
Surgery 08/11/2000 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)
Chemotherapy 08/30/2000 Adriamycin, Cytoxan, Taxol
Surgery 12/05/2005 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)
Chemotherapy 12/23/2005 Taxotere, Xeloda
Hormonal Therapy 04/07/2006 Aromasin
Comments
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Dear LindaLou - thank you for sharing with us. I am sorry about your progression and will read about your status in the above link. You are a great source of hope!
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Hi LindaLou,
I'm glad you came here to connect with us. I'm so sorry for your long dealings with this horrible disease. I read the link you provided about your progression. We are all here for you, and hope you continue to come here to visit. You are definitely a source of hope and encouragement to all of us. Thank you!
Oceana
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LindaLou, I'm so very sorry to hear this. You are in my thoughts and prayers.
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linda - i am sorry....we are here for you.
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Linda Lou, I am too sorry to hear of your progression. There is an arsenal of Tx out there.
God Bless and many you get to NED asap.
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Hi LindaLou, I am really sorry to hear that you have progressed, but I'm glad you are back here and talking to us. Do not think for a second that you shouldn't - we all know that progression is a possibility; I know for me it is a great comfort know some women who are stage four because they live their lives much like we live ours & that's a really good thing to know. Sending you a zillion hugs & holding you closely in my thoughts and prayers.
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I am sorry to hear this, thank you so much for your continued inspiration and hope. My prayers and thoughts are with you. Keep us informed on things.
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Dear Linda, I am very sorry to hear about the progression. You were one of the people who helped me greatly when I first found BCO. You will always be in my thoughts because of that. I wish you effective treatment and continued good days.
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Thanks so much for sharing your sad news with us. I am so sorry to hear of your recurrence. You are well known on these boards as a very helpful and knowledgeable person, and you have personally helped me over the years with factual and logical advice. I hope you will continue to visit the Stage III boards and let us know how you are doing.
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LindaLou53..thank you for sharing while still trying to be encouraging to us! You've responded well to treatment thus far so I can only imagine you will get this under control soon again. Please, keep visiting us as I find not hearing from our stage III sisters after they have progressed is so sad..I miss them...and we'd miss you! Stop by anytime and keep us posted on how you are doing!
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Sending you healing energy and love... I HATE THIS DISEASE !!!
hugz C
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So sorry to hear of your progression. Wishing you all the best in your new treatment.
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LindaLou, I'm sorry to hear of your progression. But you do give me hope. It scares me that so many mets happen in the 1-3 year mark when you're just getting your life back. I obviously hope that I never gets mets, but if I have to, after eight years doesn't sound too bad. A whole lot of treatment options can develop in eight years!
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Linda Lou,
So sorry that you are going through the process of dealing with the new dx. I was so impressed that you still wanted to boost us up.
I was wondering if, after your first dx, if they put you on a AI then? I do not know if they even had them available then. Curious, I hope I am not being too nosy.
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Ah....crap. At least you've proven that you can kick butt!
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Linda, I'm sorry this has happened. I do have a feeling that this will be nipped in the bud and you will be back to "don't come here frequently"
Hugs!
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8 hours ago Holeinone wrote:
Linda Lou,
So sorry that you are going through the process
of dealing with the new dx. I was so impressed that you still wanted to
boost us up.I was wondering if, after your first dx, if they
put you on a AI then? I do not know if they even had them available
then. Curious, I hope I am not being too nosy.To Holeinone: I was 47 in 2000 at the time of my first dx so I was put on Tamoxifen at that time. I don't recall hearing about the AI's until a few years later but by the time of my second dx in 2005 I went on Aromasin and have been on that the last 8 years. My oncologist may switch me to Faslodex injections once we have a pathology report on this new progression.
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Update: Thanks to everyone for all their kind
thoughts and wishes! I do hope my continued presence on this forum is ok. I would like to share new insights here also if they may be helpful.I had my appointment with my oncologist today.
The bottom line is she wants to get a biopsy first to confirm the
pathology. My Ca 27:29 results came in at 51 which is above the max normal value of 38 so it seems likely I have a recurrence.The differential dx is:
1. Breast Cancer Recurrence (most likely)
2. Lymphoma (possible based on the presentation)
3. Sarcoidosis (unlikely)
I
am scheduled to see a Head/Neck surgeon this Thursday and he may decide
to do a simple biopsy the same day or have me come back later if he
decides to do a more invasive surgical procedure. I have a palpable lymph node
at the base of my neck which seems to be the most accessible node for
biopsy/excision. The others are all deep in my chest or abdomen and
would require a more invasive procedure.If it is a BC recurrence,
my oncologist plans to stop the Aromasin and place me on Faslodex
injections. 3 months after the start of Faslodex she will repeat the CT
scan. If the current status has not regressed or stabilized, she will
move on to Afinitor + Arimidex. If the 2 bony lesions progress we will
need to start an additional med, most likely Xgeva.As my
oncologist said a recurrence in my case is "not unexpected but is also
not a disaster". The fact that I still feel good and there are no signs
of organ involvement is a positive indicator. There are many options
at this point and if I respond well to hormonal therapy the chances are
good I can get several more years of quality life. Generally speaking
my oncologist says the length of time between completion of active
treatment and a recurrence is a good indicator of the aggressiveness of
disease and possible length of survival time after recurrence. There
are many variables of course, and cancer pathologies can change which
could impact survival time, but I am encouraged that I had an extended
period of NED these last 8 years. Hopefully, there are new treatment modalities just around the corner that will increase survival.I must keep reminding myself....one day at a time....one day at a time!
Thank you again for all the support and encouragement!
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LL...this is exactly what I went through more than a month ago. TM's on the rise, PET showed uptake & enlargement to LN's behind sternum, was told it was a reocurrence, or lymphoma maybe sacoidosis, went to a thoracic surgeon for biopsy, path showed it was a granuloma and they're not really sure as to why or how. I'm hoping the same outcome for you. Sending you hugs and prayers, may HE hold you tight and give you the strength you need.
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Linda, yes, I hope you stick around with us. It is definitely OK with me. Let us know what you learn from the biopsy.
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I saw the Head/Neck surgeon today. The palpable node in my neck lies close to the spinal accessory nerve so it will require general anesthesia to safely excise the node for biopsy. It will be a quick 30 minute surgery but I will have to remain in recovery for 3-4 hours due to the anesthesia. The earliest they could schedule me is next Friday the 21st. SO...1 week after the biopsy I will get path results and meet back with my oncologist to determine if I will be starting on Faslodex for a recurrence or if something else is going on. The presumption is that the newly enlarged lymph node in my neck will have the same pathology as the newly enlarged mediastinal and retroperitoneal nodes showing on my CT scan.
I was hoping to get the biopsy sooner but am glad it is only a week wait. My oncologist had told me I could stop taking Aromasin since it is apparently no longer working, but after taking it for 8 years I think I will continue the habit until they are ready to give me something to replace it!
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Mar 11, 2014 05:28PM jennyboog wrote:
LL...this is exactly what I went through more than a month ago. TM's on the rise, PET showed uptake & enlargement to LN's behind sternum, was told it was a reocurrence, or lymphoma maybe sacoidosis, went to a thoracic surgeon for biopsy, path showed it was a granuloma and they're not really sure as to why or how. I'm hoping the same outcome for you. Sending you hugs and prayers, may HE hold you tight and give you the strength you need.
Jenny, that is really interesting! So was it a node under your sternum that was biopsied? Do they treat a granuloma? I'm very happy you had good results! Thanks for the encouragement!
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Hi Linda,
It's weird that you present with multiple enlarged nodes; cervical, chest and abdomen and no organ involvement which would be expected for a BC recurrence.
There certainly are few possibilities
Did they confirm Bone mets?
I think your docs have a great plan, and it is so true that EVEN if it is BC recurrence, your long periods of remission are favorable for a slew of reasons
Please let us know about how the biopsy goes and the results.. I'll be keeping my toes and fingers crossed for you. and please stay here with us!
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22 minutes ago lkc wrote:
Hi Linda,
It's weird that you
present with multiple enlarged nodes; cervical, chest and abdomen and no
organ involvement which would be expected for a BC recurrence.There certainly are few possibilities
Did they confirm Bone mets?
I
think your docs have a great plan, and it is so true that EVEN if it
is BC recurrence, your long periods of remission are favorable for a
slew of reasonsPlease let us know
about how the biopsy goes and the results.. I'll be keeping my toes and
fingers crossed for you. and please stay here with us!Thanks Linda K! Yes no apparent organ involvement is strange given the degree of lymphadenopathy but I gladly accept that good news. There are some issues on CT regarding my right kidney and right adrenal gland, but that is even more ambiguous at this point and seems to be related to other longstanding issues. I apparently have a congenital extrarenal pelvis of the right kidney which is often misinterpreted on CT as kidney pelvis enlargement and partial obstruction of the ureteral-pelvic-junction (UPJ). I have no renal symptoms but will be scheduling a visit with a nephrologist to determine for sure if anything is happening there. I have been getting CT scans at least annually for the last 14 years and they have always noted a small stable "mass" on top my right adrenal gland. It has historically always been referred to as a "likely adenoma". Now that I have enlarged lymph nodes I sometimes wonder if the radiologists start "seeing" what they have been seeing for years in a different perspective....thus now they are saying all these old findings are consistent with metastatic progression. So for me the waters are somewhat "muddy" until we get a definitive biospy and path report. I'm sure it is possible to have concurrent disease / anatomical abnormalities at the same time as a recurrence. The 2 small bone lesions were noted on last year's CT but this year's report interprets them as "slight progression in size". SO....too many variables at this point other than trying to pin down the cause of the lymphadenopathy! A repeat CT scan in 3 months should be more definitive on any actively changing processes.
(I'm remembering again that old "being on the roller coaster" feeling!)
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Hi Linda Lou,
hmm....Ok all the more improbable for BC mets. My bet is something of an inflammatory explanation. Fingers + toes XXX!
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29 minutes ago lkc wrote:
Hi Linda Lou,
hmm....Ok all the more improbable for BC mets. My bet is something of an inflammatory explanation. Fingers + toes XXX!
Thanks Linda K... From your lips to God's ears!!
Still wondering about that 51 result on my CA 27:29. Max normal range is 38. Can inflammation cause an elevated CA 27:29?
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Yes, I've seen elevation with no mets. These markers are historically unreliable, but if there is continuous upward trends further investigation is warranted! Personally, I think you have something else going on, but not mets.
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Linda K knows her sh**, I choose to believe her gut on this
Lindalou....don't even think you're leaving this forum. You are one of us, no matter what.
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Linda,
I'm sorry to hear about your recent development. Please stay with us either way and let us know how you are doing.
(((Hugs)))
Sharon
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