Not again!
Comments
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Oh Stephanie!
You have made my day
I am so happy for you. Im sorry you had to go thru all that though. I had the wire localization in 2005 and I passed out. All of a sudden I woke up on the floor with 5 people around me. Horrible procedure.
I will be sending positive thoughts for you next week. My follow up appts are set for June 26.
Love happy news
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More questions without answers. My radiologist and surgeon do not agree
on how to proceed. My RO is not convinced, that the last MRI shows
nothing of concern on the second spot. He also is not convinced surgeon
got enough of the first tumor, that was positive for malignancy. I am so
overwhelmed, I don't know where to begin. This has been going on for
over 6 weeks now and, as you all well know the waiting is the worst
part. I think I will seek an opinion from a second surgeon, on whether
or not to remove implant and take the entire capsule and as much tissues
as they can, to be sure nothing was left behind. I am having a pet scan
sometime this week, as well. I would appreciate your prayers and you
are all in mine. Stephanie -
after your first dcis since obviously 9 years now. How often you did your mamo please? Every 6 months? I was diagnosed with dcis last summer and as you i have fears of recurrence or a new bc. I think when you get it in the opposite breast it's considered a new bc. I appreciate your reply although im reading u just had your surgery. Thanks.
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Hi Hope, after my first cancer which was in 2001 I had mammograms every 6 months for awhile and then later once a year, but instead of having my doctor's exam right before it, I had them at 6 month intervals, it gave me a little more comfort doing it that way. Several years later I had a couple of questionable mammos followed by ultrasound, everything was fine. The second time I had it in 2011, I had no real reason, just an angel on my shoulder, but I asked my doc why am I not having Ultrasounds every time? So he said if that will make you feel better let's do it. When I went for the mammo they said everything looks good you can go. I said I am have a follow up ultrasound, they said it was not ordered, I said look again, because I am not leaving without it. Long story short that US probably saved my life. Me, myself and I are the ones who found all three of my cancers. This current one, I found the lump, went to all of my docs, who both said scar tissue, but because you are a worrier, we will do an MRI. 2 MRI's a needle core biopsy, US doc, all said scar tissue. Do not let anyone poo poo you, always trust your instincts. I had my surgery on the 22nd of May, there was disagreement between my radiologist and my surgeon on the course of treatment so I went for a second opinion yesterday and a PET scan, thank God the PET was negative my docs are now in agreement, no chemo and no further surgery. I start radiation in a couple of weeks. I'm sorry to be so long winded here, but I can't stress enough you must push for what you want, trust your gut and fight like a girl. Thank you all so much for the prayers and support and I wish all of you good news. Stephanie
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Q,
I'm in your boat, too. DCIS 3 years ago on right breast (did partial mastectomy and radiation since margins weren't clean but no tamoxifen) and recently diagnosed with left breast Stage 1 (1.9 cm), 97% estrogen, 21 oncatype. (mammogram didn't catch it, but MRI I insisted on did - word to the wise - if you have a history insist on an MRI!)
Like you, I jumped very quickly to doing a bilateral mastectomy and likely a flap. After a few weeks and more test results back (no lymph node involvement) I opted for a lumpectomy and TC chemo (first treatment was today) - maybe radiation (still waiting to hear about recos). I'm not BRCA1/2 and just found out that my extended genetic panel came back negative as well.
Did you make a decision yet? I would get a second opinion and try to breath. After research and reflection, I told myself that I would give each breast one chance before I chop them off - LOL. In my case, I KNOW mine is estrogen driven so I really need to concentrate on that: losing weight, exercise, hormone supressants (if I can tolerate them and if not, other ways to flush it from my system). I also became lax on my Vitamin D and I'm now going to be religious about that.
My oncologist here in SC didn't give me an opinion on chemo or not (she said that the research isn't in with middle range oncatypes) but my former oncologist in CA said definitely do it given that it's my second ocurence and as an insurance policy if I don't tolerate hormone limiting pills (I so appreciated his sage advice!). So far, I just feel like I have a really bad hangover with a headache from the TC chemo.
Did you decide what to do?
Deb
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Q - another thought. I also have an very strong family background of BC (although I was adopted at birth so didn't have to live through seeing my female relatives dying) - every female on both sides either died or suffered from BC. My family history was so strong that I was tested twice for BRCA1/2 - both times negative even though my bfather is positive.
What helped me this time around was having the extended genetic panel - yes, they have identified more genes - and also now look for relocations (BART). Luckily I was also negative for BART and extended so I feel like I made the right decision to do lumpectomy, chemo and maybe radiation. Everyone has a different tolerance level for risk, but I feel that I am minimizing my risk of a reoccurence (estrogen reducing things).
http://www.ucsfhealth.org/newsletters/primary_care_connections/june_2008/cancer_genes/
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Dear MomtoirishQuads
Welcome to BCO and we are sure you will get valuable feedback from the other sisters. Forum is quiet due to holidays at the moment, but some will soon give you feedback on their experiences.
Wishing you the best.
The Mods
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Hey Q324, our backgrounds seem familiar. I was diag IDC in Aug 2010. Had 2 lumpectomies followed by radiation. Nine mos after completing treatment, I was diag ILC in my other breast. I immediately opted for dbl mast with reconstruction. Soooo glad I did it!
My Mom's three sisters died from BC, my sister is a 13 yr. survivor, and I have a host of maternal cousins with varying breast problems and/or a diagnosis. My sister, cousin (her mom died from BC) and I had negative BRAC testing....go figure!
I know the masts do not guarantee freedom from BC again, but life is too damn short to worry about that. I'm just living my life and if faced with it again, I'll do everything necessary to kick ass once more. Keep strong, positive, always find laughter, and don't forget to enjoy every day!
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Sorry I have been gone so long and have not checked back to answer questions. So much as happened!
Hope14 - I had mamos every 3 months the first year and every 6mo the second year, the once per year after that. May annual mamo did not catch this. I felt it myself - it was on the other side and I am so lucky it was near the outer skin of my breast.
I was tested for 9 gene markers I believe. All normal with one unidentified variance. So sounds like they are making strides I identifying new genetic connections. I sure pray so as I have a 22 yr old daughter!
Had the bilat mx 6/11 and tissue expanders put in. Went in for my first post op the next week and developed a hematoma write there in the waiting room! Thank God I was there - blood pressure was 86/52. Immediate ambulance ride to ER. Surgery found three bleeders! Lost 1.5 liters of blood but made it through without transfusion! Sorry - hope I'm not freaking anyone out!
I met with my oncology doctor who immediately wanted to start chemo. I was so freaked. I asked for an oncotype gene test and mamoprint test. Both showed that chemo would not decrease my chance of re occurance! I'm a 6%er. So ask lots of questions!
Today I am living with these horrid TE and getting shots of Zoladex to shut down my ovaries. CT scan showed cyst lesions on my liver - we are going to watch them ( I had Hep A when I was young so could be from that).
Can't wait for the switch out on the TE. But for now I am doing the Happy Kitty dance:) Sorry I was gone so long - as you can see I have been a busy girl. I will try to check back on a more regular basis!
Love and prayers for you all! xo
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I was diagnosed in 2000 when I was 39 with Stage 2 ER positive cancer. Did the lumpectomy, chemo, rads, and tamoxifen for five years. Now 14 years later, I have a new primary on the same side as the first one. Since I already did rads on that side, I had to get a mastectomy. And because I have dense tissue, I went with a double mastectomy with expanders. When they checked the other side, they found DCIS. I think dealing with this diagnosis is worse than the first. I really thought after all this time, it might not come back. I was also hoping for no chemo but my oncotype score came back at 29, the higher level of the intermediate rating. Still a gray area, tho. I was glad to find this forum since I think hearing about cancer returning is really scary for women dealing with their first diagnosis.
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Leslienva- I'm sorry about your recurrence and wish you well with treatments . Keep us posted.
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I find your info helpful: and greatly saddened & even angry that after all treatments your cancer came back. My Onco score is 29, I am nearly 65 Stage 1, grade 2 invasive ductal w/focal DCIS Er+ PR- Her2-. My Oncologist says he will not counsel; just gives me statistics re 8-9% reduced fr 19% re chemo -- however, small cancer seeds can move to other areas of body? Am confused re reading if that is more or less likely if choose chemo? Family is far away; though my sister who is soon to become "breast cancer survivor" had an entirely diff type & Onco score low -- she avoids my questions (though she did change Oncologists). Radiation has been advised by Surgeon & Onc; Radiation says not to make choice of chemo after radiation; Onc says sort of diff. Grateful to hear fr others w/Onco score in high "grey area" and what tipped the scales re chemo....
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My second cancer was actually not connected to the first one so for what it's worth, the first treatment cured the original cancer. The second primary was quite a shock--I didn't feel it, it showed up on the mammogram. Because I'm now Stage 2 with a grade 2 tumor and ER positive and PR negative (before I was ER and PR positive), I decided to go with four courses of taxotere and cytoxan. I'd rather do what I can now then regret it later if it came back. Plus, I talked to two oncologists and they both recommended chemo. The initial reduction in recurrence rate is actually better now because they're using different chemo drugs.
If you look at some of the higher oncotype scores, there seems to be some correlation in the PR negative area. Not sure why.
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I had my second diagnosis earlier this year...I actually laughed when I saw the title of this topic because those were my exact words to the surgeon..."not again". I had a very small DCIS area this time, and breezed through surgery well...radiation was difficult but it healed quickly. Doing all I can to keep from a third diagnosis...but it's in God' s hands. Praying for all of you out there who have been through all of the emotions of multiple diagnoses
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Hi all of you wonderful people.
I know I should write my dx ' s down below.
But haven't for some reason. In 2009 when I first had dx of breast Ca I thought I would visit for strength and never come back. Well here I am. I would love to be less self absorbed. Cancer sucks. I fumbled thru my children's milestones. I was there but felt less than me.
I have had cancer 3 times. Now I face skin recurrence locally Oct. 2014. My Pet scan was neg.
B/L mastectomy in Jan 2014, finished chemo in July 2014 still on Herceptin.
I guess I am wondering if anyone has had a local skin recurrence? I need to make a decision to have RADS again.
And I'm on the fence I need to get past this.
If my tissue breaks down. I guess I can still have reconstruction. Transport tissue from belly to breast area??
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I was just diagnosed again last week. I had lumpectomy with radiation for 1.8 cm IDC in Oct 2007. Left breast. Also 5 years of arimidex. Low recurrence score. This time right breast. Seeing oncologist tomorrow for treatment plan.
I am now 61. This seems harder. I guess I convinced myself I was home free after I reached 5 years cancer free. Trying to get ready to fight but I really feel defeated and very depressed
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Bepositive,I am so sorry you are faced with this again. You did everything you possibly could have to remain cancer-free all those years. I was also diagnosed in 2007 and after I hit the 5-year mark, my anxiety actually started to climb. I'd have to go back and check for sure, but I believe I read that for ER+ cancer, our chance of recurrence starts to climb again near the 10-year mark.
I just wanted to wish you well ... please let us know how you're doing.
hugs,
Bren
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Hello All,I just wanted to reach out to those who have been where I am. I am 48 yrs. old. My first bc (ER+, PR+ and Her2+) occurred 4 yrs. ago.-radical lumpectomy, chemo and rads. plus Herceptin for a yr. and daily Tamoxifan. Everything looked positive and everyone (particularly my oncologist) was surprised by the reoccurrence (which is now only Her2+). I recently received three months of neoadjuvant chemo treatments which was followed by a BMX two weeks ago. I am scheduled to resume chemo (but the tougher type-cytotaxin, epirubicin and 5FU) in a few weeks. I am blessed to have received so much support (food, texts, flowers, gifts, cards, etc.) from my family and friends. However, I am struggling more emotionally this time around. I just want to resume some sense of "normalcy" again! I want everyone to treat me as they did before the return of bc. I wish people would understand that I'm the same person. I don't need to be "cared for"-I just want to laugh more. I know it may appear that I'm ungrateful but that is not the case at all. Please know that I recognize how fortunate I am to have others around who want to help. I guess I just needed to see if anyone else has had these feelings and how they dealt with them. Thanks for listening!!
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wow!!! I just joined this board. I was just dx with a regional recurrence,16/37 lymph nodes. My first dx was in Jan 08, I had a bilateral mastectomy, rads ,Ac and taxol,oorophectomy ,2 yrs tamoxifen,51/2 yrs femera, now I'm triple negative!
I just started my first round of carbo/ taxol.I was and still am scared. My family has been telling me the same. Stay away from stats and research. Second time around is scary, I have more uncertainty. I am still surprised by this recurrence. If it wasn't for a ultra sound done by the doctor who removed my right breast with reconstruction,whom I see once a year it would have been missed. My onc surgeon and onc did not see it. No palpable lump!!!
Thanks for the positive words!!
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Hi butterfly. Sorry you find yourself here. I'm right with you in the same boat (but I've been on BCO since my beginning). New dx just a couple of days ago - this time at least ER-/PR- (watiting on Her2). Did AC/T and rads four years ago, and now a new primary right next to my former site. Don't have a treatment plan yet but should on Tuesday. I'm an information junkie so I have had to force myself to stop googling. Much easier said than done.
Keeping you in my thoughts.
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Same here...googling can be so bad for lots of reasons. I have never done rads but last Tuesday oncologist said certain for me now. Going to BS on Thursday to schedule the full round of testing AGAIN. So stinks but I am ready to get going and get some answers. Sounds like there are at least 3 of us on the site that just found out we are on the journey again. My friend told me yesterday she is already planning February 15 to celebrate my 4 years cancer free. I couldn't tell her because she was so happy. Sorry lots of random thoughts this morning. Its a gorgeous day in Texas. Today I will try to enjoy all of it.
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