Plse help am I stage 4?

Options
EshLou
EshLou Member Posts: 17
edited June 2014 in Stage III Breast Cancer

Hello everyone, I was diagnosed in November 2010 with grade 3 IDC with significant lymph node involvement to armpit and collarbone reaching the base of my neck, they started me on neo chemo straight away FEC x 3 /Taxotere x 3 then the usual scans, I then had a lumpectomy and have just strated radio to breast/armpit and collarbone/neck area. The good news is I have had a complete path response to chemo and my pathology report following surgery was that there was no remaining cancer in breast or lymph nodes in armpit, no microscopic cells found out of 5 nodes and breast tissue. I have spent the last 3 weeks celebrating and feeling that I can finally start moving on, the breast surgeon was very positive about my future. I am BRAC1 and have said I want a double mastectomy in 6 months time. I went to see my oncologist yesterday who said that on my first CT scan there was what they called a small lesion (which they said not to be concerned about as it could be a bit of fat or blood vessel), since that time this has disapeared and she is now saying that it is highly probable that this was a very small met in my liver; she is now saying that despite my complete pathological response to chemo that I am now very high risk and it is "very likely" the cancer will recur within 2 yrs as i have "controlled secondary disease".  She told me she is recommending I dont have the double mastectomy as despite me being BRAC1 I should just go and have some quality time and worry more about metastatic disease than removal of my breasts. The nurse specialist and breast surgeon do not agree and state the spot on my liver is not conclusive and I am now seeking a 2nd opinion privately. They are all saying I am a unique case and none of them really know what my prognosis is, I asked her if this changed my stage to 4 instaed of 3 but she changed the subject. I am so confused, worried and feel isolated as they say I am a unique case, I am 31, triple negative and have genetic breast cancer and now my anxiety has been raised about mets to my liver 5 months after diagnosis, all beit they all agree I am in remission at the moment, does anyone have any views/advice or experience? Thank you and love to you all

Comments

  • lkc
    lkc Member Posts: 1,203
    edited May 2011

    Oh My Gosh, I am just floored by this.

    There is no way of difinitively knowing if a small lesion in the liver is a met unless it is biopsied!  Also it's gone so you have no visceral ( organ ) metastasis You have had what is called a Complete response to Chemo which is Excellent!! It is not unusual for something to show up;  liver or lung, but it does not necesarily always equate to mets.

    if this was me,  I would RUN to to another Oncologist, I totally agree with  the dble mastectomy as you are  BRAC1 pos.

    Relax and enjoy your good news, Find yourself a Onc that will be your advocate.

    I think your Onc is thoughtless and Insensitive. I was " written" off 6 years ago and I am NED. Only God knows what your course will be.

    God Bless.

  • bak94
    bak94 Member Posts: 1,846
    edited May 2011

    That is a tough one, glad you are going for a second opinion. I have just been diagnosed and am brca positive and triple neg also. I did all the scans and they also said mine were clear, makes you wonder if they are telling everything? They must have really thought the spot on your liver was nothing, and maybe fat on your liver can disappear? Is it possible that with complete response and even if it was a tiny met that you could be cancer free for a long time? My heart goes out to you, and I hope your second opinion will help with your decision.  

  • EshLou
    EshLou Member Posts: 17
    edited May 2011

    Linda

    Thank you so much  your story gives me so much hope as I too feel "written off". Hope is a great thing. Thanks for your positivity and advice, I will find an advocate! Ill let you know what 2nd opinion says.

    BKj66

    Thanks for your reply, Im sorry to hear you have been diagnosed again, it took my mum to have it twice then me to get it for them to even suggest a BRAC test (same shoddy oncologist), so Im glad I now know I have it and I hope you have some sense of empowerment knowing why this has happened to you, I agree neo chemo is the best and it has worked so well for me and often does for triple negatives I hear. They did tell me that I had that liver dot at the beginning but they told me it was nothing ( also had liver ultrasound a week after CT which was clear), its only that it has gone since chemo that she is now saying it was a met but still not conclusive and as Linda says Ill never now as its now gone so it cant be biopsied. Take care and all the best with your treatment. PS my mums had it twice shes a 20 yr survivor and nearly 60.

     Esme x

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2011

    It is possible you had a fatty liver spot showing. There are a million other things it could be. How brazen of your onc to tell you to forgo the mast!!! Get 'er done and get a new onc. Twit!

  • EshLou
    EshLou Member Posts: 17
    edited May 2011

    Yes they thought it was a fatty spot (2mm) at the time . But now shes convinced it responded to chemo and was therefore mets. Regarding surgery I said if I havnt had mets in the next 2 years would you recommend the double mastectomy then, she said if that happens you can come in and slap me round the face! I said Im glad your so confident Im gonna get mets you dont mind risking a slap round the face. Yes a real brazen twit and she has taken away my hope at aged 31but Im getting it back again now, she should have been congratulating my complete response and clear scans, thanks ladies .

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    I would try to get your second opinion from a Breast Oncologist at a University, if you can.  You may just have a bad insensitive Onc here but I would make sure that you get all your questions answered.  Go to that second opinion with a list of questions.  After that visit, you will have all your questions answered and will be armed with the information you need to make decisions.  Good Luck to you.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited May 2011

    I'm so sorry you're feeling so confused right now.  I'd get a second opinion b/c she can't say it was cancer without a biopsy.  At my last PET a small <5mm spot on my liver was found also, it didn't light up but was told I could do a CT/MRI to investigate it.  I asked would I then recieve more chemo if it was and dr said no, I'd continue with AI's and watch it.  Right now it's to small to biopsy anyway so I'm still IIIc and so are you!!  I'm also BRCA1+ and had a almost complete response to chemo.  I don't see why you couldn't continue with your BMX.  Hugs and prayers going your way and I hope you get some real answers soon. 

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited May 2011

    EshLou

    I had a lung nodule show up and then it was gone.  I do have bone mets but things in other areas can be many things and they never called the lung nodule 'a met' but it did resolve. 

    How dare someone tell you that it is going to return...nothing about this crappy disease has any certainty - I would sure be looking for a second opinion!

    Hugs to you...LowRider

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited May 2011

    EshLou, I'm not Stage IV -- but the topic of mastectomy in women who are Stage IV has come up on this board previously, and I thought I would post some of the research links that have been posted here previously, a lot of it gathered by members English Major and rkt (Becky).

    Even if you actually are in Stage IV (which is not clear at all ! ), the idea that mastectomy is of no use to women who are Stage IV may be outdated.  Recent research seems to show improved survival for some women.  I apologize for the length, but thought this may be helpful -- even if you don't go back to your twit-onc, maybe she should read some of this!

    http://www.ncbi.nlm.nih.gov/pubmed/16614878
    Babiera GV, et al. Effect of primary tumor extirpation in breast cancer patients who present with stage IV disease and an intact primary tumor.  Annals of Surgical Oncology 2006;13(6):776-782.
    Reviewed the records of all breast cancer patients treated at M.D. Anderson (Houston, TX) between 1997 and 2002 who presented with stage IV disease and an intact primary tumor. Of 224 patients identified, 82 (37%) underwent surgical extirpation of the primary tumor (segmental mastectomy in 39 [48%] and mastectomy in 43 [52%]), and 142 (63%) were treated without surgery. The median follow-up time was 32.1 months. After adjustment for other covariates, surgery was associated with a trend toward improvement in overall survival (P=.12; relative risk, .50; 95% confidence interval, .21-1.19) and a significant improvement in metastatic progression-free survival (P=.0007; relative risk, .54; 95% confidence interval, .38-.77). CONCLUSIONS: Removal of the intact primary tumor for breast cancer patients with synchronous stage IV disease is associated with improvement in metastatic progression-free survival. Prospective studies are needed to validate these findings.

    http://www.ncbi.nlm.nih.gov/pubmed/17522944
    Gnerlich J, et al. Surgical removal of the primary tumor increases overall survival in patients with metastatic breast cancer: analysis of the 1988-2003 SEER data.  Annals of Surgical Oncology 2007;14:2187-2194.
    A retrospective, population-based cohort study by using the 1988-2003 Surveillance, Epidemiology, and End Results (SEER) program data. Overall survival in women with stage IV disease was compared between women who underwent surgical excision of their breast tumor with women who did not, controlling for potential confounding demographic, tumor- and treatment-related variables, and propensity scores (accounting for variables associated with the likelihood of having surgery). RESULTS: Of 9734 SEER patients with stage IV breast cancer, 47% underwent breast cancer surgery and 53% did not. Median survival was longer for women who had surgery than for women who did not, both among women who were alive at the end of the study period (36.00 vs. 21.00 months; P < .001) and among women who had died during follow-up (18.00 vs. 7.00 months; P < .001). After controlling for potential confounding variables and propensity scores, patients who underwent surgery were less likely to die during the study period compared with women who did not undergo surgery (adjusted hazard ratio, .63, 95% confidence interval, .60-.66). CONCLUSIONS: Analysis of the 1988-2003 SEER data indicated that extirpation of the primary breast tumor in patients with stage IV disease was associated with a marked reduction in risk of dying after controlling for variables associated with survival.

    http://www.ncbi.nlm.nih.gov/pubmed/17687611
    Fields RC, et al. Surgical resection of the primary tumor is associated with increased long-term survival in patients with stage IV breast cancer after controlling for site of metastasis.  Annals of Surgical Oncology 2007;14:3345-3351.
    Chart review (Washington University School of Medicine, St. Louis, MO) identified 409 patients with stage IV breast cancer treated from 1996 to 2005; 187 received surgical excision of their primary tumor and 222 did not. 102 patients had bone-only metastases, 281 had metastases to other organs +/- bone, and 26 had no metastases recorded. RESULTS: After controlling for age, comorbidity, tumor grade, histology, and sites of metastasis, patients who underwent surgical resection had longer median survival when compared with patients who did not undergo surgical resection (31.9 vs. 15.4 months, p < 0.0001; aHR 0.53 [95% CI 0.42-0.67]). CONCLUSIONS: Surgical excision of the primary breast tumor was associated with significantly longer survival in this cohort of stage IV breast cancer patients, even after controlling for other factors associated with survival. Randomized clinical trials are needed to validate these findings.

    http://www.ncbi.nlm.nih.gov/pubmed/17687611
    Blanchard DK, et al. Association of surgery with improved survival in stage IV breast cancer patients. Annals of Surgery 2008;247:732-738.
    Using a large database (Baylor College of Medicine, Houston, TX) of women who presented with stage IV breast cancer, we compared outcome of patients who had resection of their primary cancer to those who did not. METHODS: Of 16,401 patients, 807 had stage IV disease at presentation, and 395 survived >90 days and were included in this analysis. Clinical and tumor characteristics, surgical treatment, and survival were compared for the surgically versus nonsurgically treated patients. Two hundred and forty-two patients (61.3%) had definitive surgery for their primary tumor and 153 (38.7%) did not. Patients who underwent surgery were significantly older, were more likely to be white, more often had hormone receptor positive disease, had small primary tumors, and had fewer metastatic sites and less visceral involvement. The median survival of surgically treated patients was 27.1 months versus 16.8 months for patients without surgical resection (P < 0.0001). In multivariate analysis, which included surgical treatment, age, race, estrogen and progesterone receptor status, number of metastatic sites, and presence of visceral metastases, surgery remained an independent factor associated with improved survival (P = 0.006). CONCLUSION: Patients with stage IV breast cancer who had definitive surgical treatment of their primary tumors had more favorable disease characteristics. However, after adjustment for these characteristics, surgical treatment remained an independent factor associated with improved survival.

    http://www.ncbi.nlm.nih.gov/pubmed/18357493
    Rao R, et al. Timing of surgical intervention for the intact primary in stage IV breast cancer patients. Annals of Surgical Oncology 2008;15:1696-702.
    BACKGROUND: Recent studies demonstrate improved progression-free survival (PFS) and improved overall survival (OS) with extirpation of the primary tumor in breast cancer patients who present with metastatic disease at initial diagnosis. The subset of patients who would most benefit from surgery remains unclear. This study evaluates the pathological attributes and optimum timing for surgery in patients who present with stage IV breast cancer and an intact primary. METHODS: Retrospective, single-institution (University of Texas Southwestern Medical Center, Dallas) review of all breast cancer patients between 1997 and 2002 presenting with an intact tumor and synchronous metastatic disease. Information collected included: demographics, tumor characteristics, metastatic sites, type/timing of surgery, and radiation/systemic therapy received. Patients initiated treatment within 3 months of their diagnosis. Patients were divided into three groups based on time interval from diagnosis date to surgery date. Disease progression and vital status at last follow-up were evaluated. Analysis of metastatic PFS (defined by progression of systemic disease) benefit in relation to surgical timing was performed. RESULTS: Multivariate analysis revealed patients having only one site of metastasis, negative margins, and Caucasian race had improved PFS. Further analysis revealed non-Caucasian patients more often underwent surgical intervention for palliation versus surgery for curative intent, possibly explaining their worse outcome. Patients who underwent surgery in the 3-8.9 month or later period had improved metastatic PFS. CONCLUSIONS: Surgical extirpation of the primary tumor in patients with synchronous stage IV disease is associated with improved metastatic PFS when performed more than 3 months after diagnosis. Resection should be planned with the intent of obtaining negative margins.

  • Leah_S
    Leah_S Member Posts: 8,458
    edited May 2011

    EshLou, I can only reiterate what the others have said - you really do need a second opinion.

    And, quite frankly, if the only thing your onc will do is say "worry about QOL cause I think it's coming back" then you might want to switch oncs anyway, regardless of what you decide to do. You want someone who values your life and will fight with you.

    Best of luck.

    Leah

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited May 2011

    Oh, I am just speechless.....seems your quality of life would be vastly improved by removal of this idiot onc.  How insensitive.  And how on earth can she know that without a biopsy?  She's shooting with blanks.

    Enjoy.  Celebrate.  Fine a new onc with a heart and some compassion.

    Good for you, and no none can tell you you are Stage anything without any proof of it.

    You are Stage In Remission :).

    god bless

  • Pure
    Pure Member Posts: 1,796
    edited May 2011

    Also, please no that if you have a single spot of mets you can still be "cured" meaning it can go away and not ever come back. This is true only if you have a single met..I don't know the cure rate but the study is out of MD Anderson. Your doc should know this as well.

    I agree though I would RUN from this doctor...Hang in there..Get that 2nd opioun.

  • bak94
    bak94 Member Posts: 1,846
    edited May 2011

    You are so kind EshLou. You do not deserve a doctor to treat you that way.

  • 37antiques
    37antiques Member Posts: 643
    edited May 2011

    EshLou, I don't know if anyone told you, but the liver is an amazing organ, and one of the only ones in your body that can heal itself.  If in fact as they initially thought, it was only a fatty spot, this could have resolved itself if you started to eat differently, which I think all of us do during treatment!  Unless you really trust this doctor, I would write them off and get a new one, no one can give you a dx unless there was a biopsy! ((Hugs))

  • elmcity69
    elmcity69 Member Posts: 998
    edited May 2011

    just another voice chiming in the chorus to find a new onc ASAP. You deserve so much better!

    we all face the spectre of cancer's recurrence. your doc was thoughtless to the point of being cruel.

    good luck - let us know how you are.

    xo

    janyce

  • karen1956
    karen1956 Member Posts: 6,503
    edited May 2011

    EshLou.....I agree with LKC (I didn't read all the other posts)....run as fast as you can to another onc for a 2nd opinion.....find someone who is positive and supportive of you.....And congrats on the good news of complete response to the chemo :)

  • MandaLynn
    MandaLynn Member Posts: 73
    edited May 2011

    The following is my editorial comment: Wow, I have to say that you ladies ROCK! I always get the best info from this site. AnnNY I think it's amazing that you found those articles. I've been going through my periodic self-doubt about my proph mastectomy and I read these posts and realize that there is a strong rationale for the course of action I have chosen. I worry that I might have been too aggressive. There are so many pitfalls it seems in this journey. I think that has been the hardest thing for me. For instance: take zometa, but um it might make your jaw crumble, adrymiacin, but no might give you heart problems, take tamoxifen, but no you might get uterine cancer,... It is really effed up.



    Then you here experiences like Eshlou's and they say well don't do this because of your QOL- well EXCUSE ME I think QOL left the building a long time ago!,, seriously, I am a big believer in fighting - working every tolerable angle. and, for me the truth is the ms wasn't really that bad (although I do have my expanders in after 2 hrs -but that's another story).



    Anyway, sorry to go on and on. But, I just need to throw it out there how much I appreciate this forum. even when a post is addressing someone else's issue it can resonate for others. thank you, thank you. Jeez I think I'll shut up now.



    Amanda

  • MandaLynn
    MandaLynn Member Posts: 73
    edited May 2011

    Meant to type that the MX wasn't as bad as I thought. I type too fast!

  • EshLou
    EshLou Member Posts: 17
    edited May 2011

    you are all so kind, i feel alot better , thank you

  • EshLou
    EshLou Member Posts: 17
    edited May 2011

    forgot to say I also had a liver ultrasound after my first lot of scans and it came back all clear and by that point I had only had I session of chemo.

    Timeline -

    26112010 - CT scan

    01122010 - bones and organs said to be clear - dot on liver, no concern probably vessel or bit of fat.

    03122010 - First chemo.

    10122010 - liver ultrasound - all clear nothing seen.

    Feb - CT scan, all clear, oncologist starts saying perhaps that dot on liver was cancer as it has gone.

    May - complete response to chemo, path report - all clear, CT scan clear, howver oncologists starts telling me liver must have been cancer so therefore "very likely" to return.

     Im really confused as to why the ultrasound didnt show anything as I had only had one chemo session at that point.

    Thank you I really appreciate you all,

  • lkc
    lkc Member Posts: 1,203
    edited May 2011

    Ultrasounds are not as conclusive as CTs, Which basically means CTs are better at picking up lesions.

    From your CT report, the result of an isolated " dot" does not mean mets. I think your good.

    Once you sit down with  your new Onc, your old Onc's words will have far  less power. You will feel better.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited May 2011

    Dear Eshlou,

    This is certainly a grey area, and one where I would go to a top oncologist.  I believe you have the Royal Marsden Hospital which I where I would head if possible.  Stage IIIc is very tricky and very different from the IIb diagnosis I had.

    A lumpectomy and radiation should have blasted the initial tumor out of your system, so further surgery does not like something urgent from where I sit.  The real focus needs to be on the correct adjuvant therapy.  This may or may not include removing both breasts.

    As for "did you have mets", my own belief is that a lot of even Stage II have micromets.  In my case, no one ever looked, so I will never know (hopefully).   I would treat it as "gone until proven otherwise". 

    But you do need another opinion and with an oncologist with a great track record with patients with advanced local disease.  Not from someone who has written you off.  And you need the best in the UK. - Claire

  • EshLou
    EshLou Member Posts: 17
    edited May 2011

    Hi all. I went to see a private top oncologist , she said she thinks if I had liver mets it Wud have shown on the ultrasound and even if it was mets I cud still b cured , she is gonna get a 2nd opinion to look at the scans from last year but it's likely we will never know If it were mets or not , she gave me alot of hope and said the main thing is that I had a complete response and therefore regardless of wot category I'm in I have done the best I cud have done. She recommends MRI scan for 1-2 yrs then mastectomies , she said no rush for Dble mastectomy wait a year or two , she said as far as she is concerned I'm not stage 4 Thnx for your support x

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2011

    Thanks for the update. Keep us posted on your treatment if you feel you need an ear...

  • jennyboog
    jennyboog Member Posts: 1,322
    edited May 2011

    Congrats, I'm glad you were able to get some clear answers and reassurance.

  • EshLou
    EshLou Member Posts: 17
    edited June 2011

    I'm in such a state , I feel hopeless , I am eaten up by worry about the future and secondary disease , I'm so scared of not being able to have kids and leaving people Behind, I don't know if I can cope with these feelings, how r we supposed to cope wiv the fear? I lost my older sister to cervical cancer 2 yrs ago and my dad just died of lung cancer , I feel so worried X

  • thegood5
    thegood5 Member Posts: 478
    edited June 2011

    EshLou, this whole thing just sucks, doesn't it?  So sorry to hear you had such an inconsiderate onc...but really glad you got a second opinion!  And congrats on how far you have come!!  I have days like that too, where the fear just eats away at me, and rather than dwell on it, I try to find the positive, which can be really hard!  I was dx in Sept. and am HER2+, so I was told that Herceptin would work wonderfully for me and they thought that my survival rate was 90%+.  Then I had a PET scan and they found a spot on my liver.  I, like you, was told this is extremely rare...ususally people are either covered on their liver, or have no spots at all.  I was a bit of a medical mystery also.  I went to see a top onc at the University of Pa and he agreed totally with my onc here at home that this was rare and in his 20+ years, he only knew of 8 people who went thru this.    After recieving my first tx of chemo, all tumors had either shrunk or melted away totally.  They were a bit confused about the met on my liver, because at one point it looked solid with liquid in the center, which made them think that it possibly was a cyst instead.  But the fact that it was shrinking made them think it was cancer.  They also found some other tiny spots but said that is not surprising, most everyone has cyst-like spots on their liver.  So now that I finished radiation yesterday (yea!)  I will be having a PET scan next week followed by a liver MRI.  If no other spots have shown up, I will be having a liver resection in a month or so.  I saw the top liver surgeon at U of PA and although we want answers and someone to tell us all will be fine, even she couldn't do that for me about the surgery.  She said that it would be a difficult surgery, but well worth it if no other spots have come about.  Some people's cases can be kind of cut and dry, and other's, like ours, are extremely confusing to not only us, but the dr's too.  I was told back in Feb. that they found a spot on my sternum that was hidden by a positive node that I already knew would be getting rads.  One Dr. was saying he is almost positive that it was a met, and another saying he doubted it.  It was the only spot that the chemo didn't shrink.  I had a sternal bone biop done to see, since I would need it radiated if it was a met, and it came back negative.  They said that we will never really know if it had been cancer at one time or not.  Could just be a discoloration on my bone.  So...long story short...sometimes even the Dr's don't know and yes, we need to be our own advocates during this crazy time.  Hang in there and trust your gut.  Wish I could give you a hug to help calm your worries.

Categories