Update on my story

[fauxgypsy]

Hopefully someone can learn from my mistakes! And help keep me from making new ones. I will not be as trusting again. I will not assume that any doctor knows best. I will spend more time looking at my options and I WILL ALWAYS get a second opinion.

Jan. 26- mammogram and ultrasound- suspicious lump in outer quadrant of right breast

February?-~a week and half later- lumpectomy, infiltrating ductal carcinoma ~4.5 cm (appeared to have increased in size in since the mammogram ) and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3, referred me to a well known clinic in Memphis

February 20-PET scan showed something on liver, onc said it looked "moth-eaten", and it did. Nothing showed up in lymph nodes on the scans. Said I was stage 4, tried to get me into a clinical trial for avastin, they said it was not measurable, so no clinical trial. Onc said because the lesions on my liver were so small and scattered it would be very diifficult to biopsy but they were sure it was metastatic breast cancer. My other tests showed nothing anywhere.

March- Started carboplatin, herceptin, taxol on a four week cycle, not dose dense

Sometime in April- onc says that it might not have been in my liver after all, maybe it was a fluke. That he wished he had done a biopsy. That he shouldn't have let the radiologist talk him out of it. Maybe he should have shared this sooner.

May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy

June 21- appointment with new onc, talked with him longer than I have total with first onc, very concerned that there had been no biopsy, discussed treatment, tests, etc, scheduled bone scan, CT, with and without contrast

July 6- first onc keeps wishing he had done a biopsy, maybe we should consider a mastectomy, might bring it up at "show and tell", but thinks his colleagues would not agree that the 1st PET scans were wrong.

July 9- new onc tells me he has been on vacation in Hilton Head but while he was there his thinking on my treatment had crystallized (I am amazed that he was thinking of me on his vacation.) The new tests showed no cancer. That there should have been a biopsy but it is obviously too late, However, he believes that the first PET scan may have been a false-positive in the liver, but either way, there does not appear to be cancer anywhere else in my body. He thinks that I should get a mastectomy, that it is my best option to hopefully remain cancer free. We will also continue herceptin for another 6 months.

My opinion is that it can't hurt. If it has not spread, then the mastectomy will help prevent it from spreading; if we are wrong then it won't change the first diagnosis either way.

July 18- met with surgeon, scheduled mastectomy for August 9

I feel like I have been on a roller coaster ride. I am comfortable with this decision but if anyone has any on advice what tests I should have as follow up and how often, please let me know.

Leslie

[Esther]

Leslie, when I was first diagnosed and treated for primary BC, the surgeon was very clear that a mastectomy would only prevent a recurrence in the same breast tissue.

A mastectomy would not prevent distant metastasis to another organ. I'd think about this and maybe get a second opinion on it if your only reason for doing a mastectomy is to prevent mets.

Further to Esther, I believe that mastectomy is equal to lumpectomy and radiation with respect to likely recurrence--or very very close. You might consider her suggestion of getting another opinion. You have time.

Sorry you had such a scare and very glad to hear it wasn't mets. That's good news, indeed.

[Lani]

not trying to open up a Pandora's box, but there is a school of thought that the genes which are turned on (and turned off) in breast cancer are very like the genes turned on and off in the signature of inflammation and wound healing and that the smaller the surgery that is done the better. The thought is that a mastectomy might stir up more of these cytokines and other substances which might actually worsen the situation. Interestingly, when they looked at women who for one reason or the other (fear, lack of access to medical care, etc) had their surgery long after the lump appeared, they found that the tumors recurred with a large spike two years after surgery (not 2 years after the lump was discovered) implying that something about the surgery was responsible for starting the clock ticking and causing the mets to manifest.

This explains the trend to neoadjuvant therapy, whether herceptin plus an AI (trial, I believe) or herceptin plus chemo, in order to allow a smaller surgery to be done and the trend toward the performance of core/needle biopsies.



As Esther says, the current thinking is that mastectomy only prevents local recurrence and not distal metastases and even if you did recur locally a repeat lumpectomy could be performed without (in many papers), as I understand it, significant worsening of prognosis.

(Just throwing things at you): Has anyone discussed radiation therapy to decrease your chance of local recurrence. Also, has anyone discussed a lymph node biopsy at this stage--they do it after neoadjuvant(pre-surgical) chemo to try to see how effective the treatment has been so perhaps it would be a consideration if it would change your treatment--otherwise I have read papers of radiation therapy given to the axilla (armpit) in those where lymph nodes have not been biopsied. I am not recommending anything--just raising questions.

Could you talk any of them into ordering circulating tumor cells test. It is done by Quest's Nichols Lab and called Cell Search and since you were considered Stage IV should be paid by insurance. If you have them, they can be followed with treatment and probably a mastectomy won't really make a difference as it is more likely there are dormant cells in your bone marrow or elsewhere and your problem is not really local.

I have no qualifications to give ANY ADVICE--am just well-read and trying to be helpful.

Where are you located. as a second/third opinion might be helpful

PS has anyone restudied your liver and what have they found?

Hope some of this helps!

[Lani]

Curr Treat Options Oncol. 2007 Jun 8; [Epub ahead of print]
Integrating Circulating Tumor Cell Assays into the Management of Breast Cancer.

Dawood S, Cristofanilli M.
Department of Breast Medical Oncology, The University of Texas M.D Anderson Cancer Center, Houston, TX, 77030, USA, Shaheenah_d@yahoo.com.
OPINION STATEMENT: Breast cancer is the most frequent type of cancer in women with major cause of death being metastatic disease. Despite aggressive adjuvant systemic therapy with a variety of novel chemotherapeutic and biologic agents recurrence rates vary widely with current conventional prognostic and predictive markers failing to reliably predict recurrence in either node negative (low risk of recurrence) or node positive (considered to have a high risk of recurrence). The ability to detect the presence of minimal residual disease in various body compartments such as the bone marrow, lymph nodes, and peripheral blood represents a viable alternative. Various methods to detect circulating tumor cells (CTCs) have been described including techniques based on polymerase chain reactions (PCR) and cell enrichment methods. Studies have shown that CTCs in metastatic breast cancer can be used as a marker for overall survival and assessment of therapeutic response. The role of CTCs in early stage breast cancer is less well-established. Large prospective trials are needed to further understand its biology and confirm its role as a predictive and prognostic marker before we can incorporate it into the conventional staging system.
PMID: 17634836 [PubMed - as supplied by publisher]

[Lani]

indefinitely, like true Stage 4 or for a year like a early breast cancer patient
(and not having had the lymph node biopsy it is difficult to stratify and stage you anyway)

this seems to be the wave of the future and here is a more strongly worded article by the same author:
Clin Breast Cancer. 2007 Feb;7(6):471-9. Links
Circulating tumor cells in metastatic breast cancer: biologic staging beyond tumor burden.

Cristofanilli M, Broglio KR, Guarneri V, Jackson S, Fritsche HA, Islam R, Dawood S, Reuben JM, Kau SW, Lara JM, Krishnamurthy S, Ueno NT, Hortobagyi GN, Valero V.
Department of Breast Medical Oncology, University of Texas M. D. Anderson Cancer Center, Houston, TX 77030, USA. mcristof@mdanderson.org
BACKGROUND: The detection of circulating tumor cells (CTCs) predicts overall survival in patients with metastatic breast cancer (MBC). However, it is unknown whether CTCs have superior value compared with other standard prognostic factors. We compared the prognostic significance of CTCs with clinical and laboratory measures of tumor burden and phenotypic subtype of disease. PATIENTS AND METHODS: One hundred fifty-one patients with MBC evaluated between 2000 and 2006 were included in this retrospective analysis. Circulating tumor cells were isolated and enumerated in whole blood using an immunomagnetic bead system (CellSearch System). Overall survival was evaluated according to the level of CTCs (negative: <5 CTCs per 7.5 mL of blood; positive: >or=5 CTCs per 7.5 mL of blood), Swenerton score, cancer antigen 27-29 level, age (<50 years vs. >or=50 years), hormone-receptor status and HER2 status, metastatic site, and type and line of therapy. RESULTS: The median age of patients was 53 years (range, 24-88 years), and 44% of the patients had >5 CTCs. The median overall survival for negative versus positive CTCs were 29.3 months and 13.5 months, respectively (P<0.0001). In the multivariable Cox model, the detection of>or=5 CTCs demonstrated the highest hazard ratio with 2.2 times the risk of death (P=0.003). The prognostic value was independent of measure of tumor burden and type and line of therapy, and phenotypic subtype of the disease. CONCLUSION: Circulating tumor cells have superior and independent prognostic value of tumor burden and disease phenotype and might represent an important marker of tumor biology in MBC. Detection of CTCs should be considered for new staging stratification of patients with MBC.
PMID: 17386124 [PubMed - indexed for MEDLINE]

[SoCalGal]

Leslie,
One thing remains on my (big chemo fog today) mind - you did NOT get clear margins, right? THAT IS MANDATORY. If they can go back in, and get at the minimum, clear margins, you might be cured. Still the best way to eliminate cancer is to cut it out. I think your case sounds hopeful - maybe w/mastectomy or similar you will be cured? I did bilat mas. w/recon. in 2002. I did not go metastatic until 2007 so I don't know if the surgeries caused a response or not.

I am an 11 year survivor but am not too sure about another round of this carbo/gemzar on tykerb sh*t.

Blessings!
Flori

[Andrea Barnett Budin]

Leslie, It is so wise of you to post your story and open up discussion. These women who have responded are brilliant, I know not medical professionals, but listen to all they came up with! Second opinion (actually thrid) sounds doable, especially within the time frame. Monday morning, you must get on that.

Lani, I am always beyond impressed by your posts. They are over my head and require translation, generally. But today -- you spoke to us (Leslie) with words that reached out and grabbed me. Your understanding and knowledge is invaluable. Thank you for always being there for all of us, but especially today -- for Leslie. With clear cut options and plenty to ponder! You're a blessing, Lani! Which I always knew, but thank God you came through with the lingo that could penetrate my brain, and hopefully Leslie -- yours too.

Leslie, I know how bright you are, and I hate the story of all you've been through, the missteps your first onc took and the repercussions. The angst and remorse and all the rest. I understand you're wanting resolution, but Lani and others have raised imperative points that need addressing. The in depth advice you've gotten is a gift. Don't let it confuse you. Use it. Let it help you in making decisions that are crutial. My love for you clouds my thinking. I want what you want. I want you to be well and happy, whatever that takes. Please consider all I've just read. My head is reeling, so surely yours, Leslie, is running in circles for the moment. When you calm down, reason it all out. You can do that. Your mind is remarkable. I have been touched by your clarity of thinking and your openness to ideas. Let us all know about Monday, July 23, please! Sending you love, hugs and prayers for wisdom and guidance, ANDI

[fauxgypsy]

Thanks for all the suggestions. I have done quite a bit of reading on this subject. From what I have read, the option of saving the breast is preferable for those with lumps under 4 cm. It does not seem to be the model for those with larger tumors or multiple tumors. There was also another tumor. In addition, the first surgeon did not get clear margins. I will discuss what I am hearing about the mastectomy possibly causing recurrence with my doctor. I will check on the test for circulating tumor cells. But at the moment I am not comfortable with leaving it there and possibly having it spread. As long as a tumor is in your body there is a possibility of cells escaping from it, hence circulating cancer cells. I am still researching this and look forward to any more research papers that any of you might suggest.

Leslie

[fauxgypsy]

It is late ( early?). Decadron strikes again. They have done tumor markers but is that different from what ya'll are asking? Also, my main question was more about follow up. What kind of tests did your doctors do to check for recurrence afer the surgery? How often?

Another question, If inflammation is a problem, and it appears that it may be) then does the inflammation caused by radiation not figure into this in any way? I haven't found any references to this in the research. Because if I had a another lumpectomy would it not need to be followed by radiation? As it stands now, I will not need to have radiation and it carries its own risks. By the way, inflammation of one sort or another is always a problem for me, I have irritable bowel disorder, occasional bouts of pancreatitis, TMJ and I have fibromyalgia. From my reading it seems that inflammation of any kind can be a problem. Several of the research papers I read cited allergies and ahsma ( for some reason tonight I cannot for the life of me, get my spelling right) as possibly being involved in lung metastasis.
I also understand what you are saying about the surgery and metastasis but it seems to me intuitively that if it is not there than it cannot be sending little cells out through my body. They may already be there and we cannot test every tissue but at least it will not be seeding more.
I do appreciate all of your comments.

Leslie

[Lani]

especially her2+ disease as it makes enzymes which breaks down the barriers to cells leaving via the blood stream, makes the cells have the ability to migrate more vigorously, makes the cells rather invisible to the immune system--which is why before herceptin her2+ bc was know for often recurring earlier than other bcs and causing death within one year of recurrence on average rather than within two years as with her2- breast cancer (got the above info from Dr. Slamon's lectures).Thus it is felt that long before the tumor became visible on mammo or palpable tumor cells were spread to the bone marrow where they lie dormant like mold on a bathroom shower curtain, just waiting for the right conditions to occur to spring back to life and making more of themselves.

Some think it is the angiogenic (new blood vessel growth encouraging) substances that inflammation brings --it is necessary to make such substances with inflammation as that is the way the body heals injuries and new blood vessel formation is the first step to stopping the bleeding, plugging the puncture in the body, attaching the two sides of the broken bones together, etc)

That is why it makes sense to look already for dormant metastatic disease cells in her2+ bc. Dr. Braun of Germany has done lots of studies showing that those with her2+ isolated tumor cells in bone marrow biopsies have a shorter survival and studies in Metastatic bc patients have shown that those with the most circulating tumor cells, especially those whose ctc numbers increase with treatment, have the shortest survival. There is a fear that they may scare some people unnecessarily if they find the results unfavorable--but from what I have read no normal patients have circulating tumor cells, and those that are ER+ may mean less, but those that are her2+ may mean more. Your doctor may feel uneasy with this as it is hard to make a decision based on information one doesn't yet fully know how to interpret--but it might help your" female intuition" help you make this difficult choice

Neither of these are called the typical "tumor markers" ordered routinely.

I only mentioned them as they are commercially available and MAY be paid by insurance in your case as you were diagnosed with stage 4 even though that may have been wrong.

Couldn't hurt to bring it up.

If you could travel for a consult, Dr. Pegram just took up a position in Miami. He and Dr. Slamon are responsible for most of the work on herceptin.

As it is your right breast--at least you don't have to worry as much about your heart. You did not originally say you had two tumors nor have you given information (at least I don't remember seeing it regarding the pathology of the second tumor)about it. If you had four tumors in different quadrants then, of course, a mastectomy makes sense.

They are finding the size of tumor nowadays is felt to matter less than it has in the past--more importantly with a large tumor is whether it responded to neoadjuvant (preop) therapy and you did not have that, so no useful info there.

Sorry if I rambled..hope you got some useful info with this...

[SoCalGal]

Leslie,
If you need to come to LA for consults you are welcome to stay with me. Let me know if there is anything I can do for you in this area - I am at UCLA twice a week and Cedars Sinai every two weeks.
Flori

[fauxgypsy]

I had to step back from this a little. I was feeling a little overwhelmed. I guess I did not make my first post clear. I really was hoping that by sharing my story I could help prevent someone else from making the mistakes I did at the beginning. I should have insisted on a better surgeon instead of going to the one the health department set me up with and I should have insisted on a liver biopsy. What I need to know is what to expect after surgery, how often are follow up tests performed? What tests? Lani, I will look into the CTC test this week.
I do appreciate the information and the concern. Flori, thank you so much for the offer. I live in Mississippi and because I was uninsured (self-employed and uninsurable due to some other health problems) I am on Medicaid. I am not sure what they will pay for. I really need to get things back as close to normal as I can as soon as I can because I am self-employed. And to stay sane.

I could get more opinions and take more time but in the end there aren't that many options. If I were to have another lumpectomy, that would cause inflammation as surely as a mastectomy will. So, it seems that I have two options, in reality, no matter how many second opinions I get. One is surgery; one is to stay on herceptin indefinitely. Neither one is a perfect solution. The first one gives me hope, even though it may be false hope. The second one is an acceptance of metastatic cancer that I am not ready for. In a sense I have had a third opinion. My surgeon is a surgical oncologist. I will look into my options further but I am okay with this decision as the best one under the circumstances. Hope I am making sense. Yesterday I was panicky. I have been so calm throughout all of this but yesterday I lost it.

Leslie

Lesle

Leslie,

With respect to follow-up, I'll list my treatments, which aren't too different I think from the standard.

(1) Visit surgeon for after care, swelling, etc.
(2) Get pathology report.
(3) Depending on report, possibly chemotherapy, possibly even radiation with mast. Definite with lumpectomy. If chemo is needed, it comes before radiation.
(4) During chemo, see oncologist at beginning every 3 weeks; after six months, every six weeks.
(5) Tumor markers, if doctor takes them, every three months or so.
(6) Mammogram after six months.
(7) Mammogram again after one year.
(8) Scans: CT, MRI, PET, depending on any symptoms you may have or any findings that show up during surgery or through markers. Also, depends on insurance coverage.
(9) One year out, if treatment has gone well, see oncologist every four months for two years. Probably order tumor markers, may order scans.
(10) Regular breast mammograms or MRI.

And not least, NED!

You've had a tough road--I'm glad the panic is gone. You'll make the right decision for you.

[Sheila]

Leslie
As followup, I would aslk for a yearly Brain MRI, a CT scan or Pet Scan, and a bone scan.....anything out of the ordinary that lasts more than a couple weeks should be checked in to. Oh yeah, and then the CTC or tumor markers every 3-6 mos....although they are not accurate for everyone. I would also take the Herceptin as long as you can...it can't hurt, only help! This disease can make us all insane.....we are here to help you, just ask.

[StephN]

Dear Leslie -
I GET what you are saying about warning others off of just believing the first opinion that you have mets.

Normally there is not a question, but your liver seems to have had an unusual look about it. Funny that the PET in Feb showed those small spots and they were not on the latest scan. Or did I misunderstand that they were NOT there OR just did not "light up?" You were on a strong chemo in between those PET scans so that could have had a theraputic effect and knocked them out.

The other point I would make is that you could have been a candidate for NEOadjuvent chemo - to shrink those tumors and go after any stray cells that may have gotten in your blood steam. Normally neoadjuvent is done to minimize the risks from mast or get the patient into a category where a lumpectomy is successful.

I am wondering if you can have an ultrasound or some test to measure just what IS left in your breast. If the liver spots responded to the chemos, perhaps the breast tumors have also responded. I am sure Medicaid would not want to pay for a breast MRI, but it is probably warrented it you case.

All the best!

P.S. For followup I was on a 3-month program of tumor markers, onc visits, chest x-ray and bone density scan. First 3 month tests showed elevated markers and extensive liver mets. I had a very small primary tumor, but very high grade and in nodes.

[fauxgypsy]

The second Pet Scan two months after I started chemo showed nothing in either my breast or my liver. The doctor did the second PET scan because he was having second thoughts about not doing the biopsy. In the first PET scan there were small bright spots throughout my liver and my breast was lit up like a light bulb. I had an MRI during the same time as the first PET and it didn't show anything on my liver either. I had a CT with and without contrast about 3 weeks ago and it showed nothing. There was also a bone scan that showed nothing. I am excited that nothing is showing up but I do wish there had been a biopsy at the beginning. It would have elimnated so much uncertainty. I have had 5 months of CTH at this point. Something has worked for me. I will be continuing the herceptin after the mastectomy for several more months. After that I just don't know.

Leslie

[TSund]

Leslie,

Thank-you for sharing.

I have some questions re: the info on masectomy pre-adjuvant, etc., but since Leslie started this to help others avoid the troubles she's been through, I will attempt to start a new thread.

THank-you!

Terri