Anyone with DCIS with lymph node positive?
Comments
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Isn't it true that just as it's possible to miss a tiny microinvasion on pathology of breast tissue, it's also possible to miss a tiny amount of cancer present in a node w/ a SNB? I wonder how many false negatives there are in both situations.
Best wishes to you, Zoegr.
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I found a more recent study by the first author of the article zoeg linked us to. This article is "An update of sentinel lymph node mapping in patients with ductal carcinoma in situ." Presented at the Sixth Annual Meeting of the American Society of Breast Surgeons, Los Angeles, California, March 16-20, 2005 Caren Wilkie M.D.a,
, Laura White B.S.a, Elisabeth Dupont M.D.a, Alan Cantor Ph.D.b and Charles E. Cox M.D.a,
It's in the American Journal of Surgery 19 (2005), No. 4, 5563-566. I can't link to it, because I accessed it through my university data base (which is restricted). I also can't really understand it all, but I cut and pasted below the take-away conclusion. I also think it's important (at least for me) to remember this is one study and one set of opinions. It may not represent the consensus, and I may not be understanding it all correctly.:
DCIS is not one disease. The behavior and prognosis are a function of tumor biology, and some types of DCIS tumors are more aggressive than others. These higher-risk tumors are more likely to be associated with invasive carcinoma when definitive resection is performed, and sentinel lymph node evaluation is important in these patients.
Predictive factors such as microinvasion at the time of biopsy and high grade are associated with a higher incidence of upstaging (16% and 13%, respectively) to invasive carcinoma. Presence of a mass by mammography doubled the risk of invasive carcinoma, and core biopsy is also associated with a greater risk for upstaging in DCIS (20%-25%) [11] R.J. Jackman, F. Burbank and S.H. Parker et al., Stereotactic breast biopsy of nonpalpable lesions: determinants of ductal carcinoma in situ underestimation rates, Radiology 218 (2001), pp. 497-502. View Record in Scopus | Cited By in Scopus (149)[11]. However, our previous report [13] and the report of Lee et al [18] showed no difference between vacuum-assisted core biopsy and surgical biopsy when comparing the risk of upstaging DCIS to invasive carcinoma.
The tumor biology of DCIS is still poorly understood, and diagnostic technology to accurately predict DCIS behavior is lacking. The traditional surgical paradigm in DCIS, which concludes that nodal evaluation is never required, fails to consider higher-risk disease and the associated higher incidence of invasive carcinoma when definitive resection is performed. Selective utilization of sentinel lymph node biopsy in DCIS is optimal. Based on current data, we would recommend sentinel node biopsy in patients who are undergoing mastectomy for DCIS, patients who have DCIS with microinvasion, patients who have high-grade DCIS at the time of biopsy, and patients who have a mass by mammography. If the patient has had a core biopsy diagnosis of DCIS, the possibility of upstaging to invasive carcinoma should be discussed and the need for possible nodal evaluation should also be addressed. In our own series, when all patients with these risk factors are considered (including core biopsy in the DCIS subgroup), the total number of patients meeting criteria for sentinel lymph node biopsy is 534 of 675 (79%). The combination of low morbidity and greater risk for invasive carcinoma at the time of definitive resection make sentinel lymph node biopsy an important consideration in high-risk patients with DCIS, whereas the actual finding of micrometastatic disease on immunohistochemical analysis is of little or no consequence in patients with a noninvasive diagnosis of DCIS.
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If I am reading this correctly, those with high grade DCIS should have the a SNB? Am I understanding that incorrectly? Now I am really nervous. This waiting and then more waiting is so hard. I was told 3-5 days for path results after lumpectomy. I am hoping to hear Mon or Tues. Thanks for all the info.
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I went today to the hospital and asked the doc who makes the pathology reports what he thinks about my situation (DCIS and a pos lymph node). What he told me is that there a possibility to be a very very tiny microinvation that they missed while they examined the breast because it is impossible to check every single cell of it. In my situation since there is a node involvement they are not consider thdcis anymore but invasive cancer. B
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I am really sorry. I should not have posted just a snippet from an article, because I think we may not fully understand the context. I am going to try to post a link to the article. It may not work because you may have to go through my university access. I will hope that Beesie can help us sort through this. I did my first post because it seemed to me that the person who Zoe first cited (Dupont) had more recent work that suggested not everyone who has DCIS should have SNB. I am not sure I completely understand this second article, but I think they are saying that in patients who (upon final pathology) are upstaged, a SNB is necessary (which we all know); they are further saying that it may make sense to do a SNB before upstaging in patients with highest potential to be upstaged (I think this is the controversial part). But I don't know that one can automatically draw that conclusion is warranted based on just their study, especially since NIH and NCI guidelines are pretty clear about doing SNB after the upstaging (at least as far as I can tell). Thinking of you Mom3, hoping that I didn't add to your anxiety (really sorry about that) and hoping for good results. .
If you can't get it, here's the abstract
AbstractObjective: The purpose of our study is to further clarify the incidence of ductal carcinoma in situ (DCIS) patients that are upstaged upon final pathology and/or have metastatic disease in the axilla.Methods: All patients were diagnosed with DCIS or DCIS with microinvasion (DCISm) on their diagnostic biopsy and received a sentinel lymph node (SLN) biopsy between 1994 and 2004. Six hundred seventy-five patients were divided into 613 patients with DCIS and 62 patients with DCISm.Results: Sixty-six of 675 (10%) were upstaged to invasive cancer. Fifty-five of 613 (9%) patients with DCIS were upstaged, whereas 11 of 62 (18%) patients with DCISm were upstaged. Forty-nine of 675 (7%) patients had SLN. Twenty-two of 49 (45%) patients with SLN had invasive carcinoma or DCISm on final histology.Conclusions: After review of histology, grade, type of biopsy, and mammographic findings, the combined findings of high grade, mass by mammography, and microinvasion predict patients at higher risk for invasive carcinoma. Selective utilization of SLN biopsy in DCIS is recommended. © 2005 Excerpta Medica Inc. All rights reserved.Keywords: Ductal carcinoma in situ; Sentinel lymph node mapping; Breast cancer; Lymphatic mapping; Upstaging; DCISm; DCIS with microinvasion
And here's the introduction.
Sentinel lymph node biopsy has evolved to become the
primary means of axillary lymph node evaluation in patients
with node negative breast cancer [1-3]. The morbidity of
the procedure is low [4,5], and a negative sentinel lymph
node reliably predicts node negative disease, allowing 60%
to 70% of breast cancer patients to avoid axillary lymph
node dissection [1].
Ductal carcinoma in situ (DCIS) comprises 25% to 30%
of breast cancers detected by mammographic imaging [6].
Ductal carcinoma in situ with microinvasion (DCISm) is
less frequent [7] and is defined as ductal carcinoma cells
extending beyond the myoepithelial layer of the duct in foci
less than 1 mm. The published axillary nodal metastases rate
in DCIS is less than 1% [8], and because of this low
metastatic potential, nodal evaluation in patients with DCIS
is not routine. However, published studies have relied on
tumor registry data, where the definitive diagnosis of DCIS
is established [9,10] to draw conclusions about treatment
planning. Herein lies a major flaw because definitive diagnosis
cannot be achieved until the final pathology review
and may vary greatly from the biopsy diagnosis. The focus
of this investigation is based on the data derived from the
initial biopsy report as the patient would present to the
surgeon for preoperative decision making.
Because DCIS and DCISm are not usually palpable and
are mammographically detected calcifications, the diagnosis
is usually based on stereotactic core biopsy. There is a high
degree of concordance between histopathology of specimens
obtained at stereotactic core biopsy and surgical open
biopsy, but in 20% of cases of DCIS diagnosed by stereotactic
core biopsy, invasive cancer is found after definitive
surgical resection [11,12]. Surgeons make treatment deci-
sions based on stereotactic core biopsy data, and the presence
of invasive cancer at the time of lumpectomy would
require a second operation to evaluate axillary sentinel
nodes. In addition, if a mastectomy is performed for DCIS
and invasive cancer is found in the mastectomy specimen, a
sentinel lymph node biopsy is no longer possible and an
axillary dissection would be required.
Currently, there are no reliable prognostic factors to
accurately predict the probability of invasive carcinoma in
patients with a biopsy diagnosis of DCIS or DCISm [13].
There is some correlation with a palpable or mammographic
mass [14,15] and microinvasion on biopsy histology [13,15].
The purpose of this study was to clarify the incidence of
patients with a biopsy diagnosis of DCIS and DCISm who
are upstaged to invasive carcinoma at the time of definitive
resection and the incidence of axillary metastases. Prognostic
factors were also evaluated to determine if selective
sentinel lymph node biopsy could be recommended in subgroups
of patients with a biopsy diagnosis of DCIS who are
at highest risk for being upstaged to invasive carcinoma.
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Thanks for the 'whole story". You really didn't add to my anxiety...I did that all by myself! Info is good and I have learned to prepare for the worst and hope to be pleasantly surprised.
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In response to a question about whether an SNB is necessary for someone with DCIS who is having a lumpectomy, I recently scanned a lot of the literature about this. While there isn't universal agreement, overall the consensus seems to be that an SNB is not necessary for those having a lumpectomy, the possible exception being those who have a large amount of high grade DCIS (grade 3, particularly with comedonecosis). Here's some of what I found:
- In a review of NSABP DCIS Protocols B-17 (lumpectomy +/- whole breast irradiation [WBI]) and B-24 (lumpectomy plus WBI +/- tamoxifen), the risk of axillary recurrences in patients was less that 1%. A similar finding of very low axillary recurrence in long-term follow-up of DCIS patients treated with lumpectomy and WBI was reported by the City of Hope Cancer Center. This extremely low rate of recurrence is less than the positive axillary metastasis rate associated with undiagnosed invasive cancer within the presence of DCIS. Thus, the routine use of sentinel node biopsy (SNB) in patients with pure DCIS is not indicated, since there is no survival data of any magnitude in patients treated by SNB who have an axillary recurrence.....In summary, at the present time, based on currently available data, the routine use of SNB in all patients with pure DCIS is not warranted. For patients with proven invasive or microinvasive disease with DCIS, SNB is supported. In patients undergoing mastectomy for DCIS, SNB is recommended at the time of mastectomy. A case-by-case decision should be made for the use of SNB in patients who have high-risk DCIS or large tumors. http://consensus.nih.gov/2009/dcisabstracts.htm#julian
- We conclude that based on the current literature, there is in general no role for a SNB in DCIS. A SNB should only be considered in patients with an excisional biopsy diagnosis of high risk DCIS (grade III with palpable mass or large tumour area by imaging) as well as in patients undergoing mastectomy after a core or excisional biopsy diagnosis of DCIS, although SNB may be contraindicated in many of the latter patients because of lesion size and/or multifocality. http://www.ncbi.nlm.nih.gov/pubmed/17300928
- INR (ipsilateral nodal recurrence) in patients with DCIS treated conservatively is extremely rare. Our findings do not support the routine use of SNB in patients with conservatively treated, localized DCIS. http://www.ncbi.nlm.nih.gov/pubmed/17534687
- SNB as a diagnostic tool in DCIS remains controversial as the number of cases of axillary lymph node metastases is minuscule. The biggest clinical challenge in this situation is a group of patients with primary diagnosis of DCIS in which invasive components are seen by mammotomic biopsy. http://www.ncbi.nlm.nih.gov/pubmed/18723312
- A different opinion: SNB positivity in pure DCIS is rare. In view of the high rate of underestimation of invasive carcinoma in patients with an NCB diagnosis of DCIS in this study, SNB appears justified in this group of patients. http://www.ncbi.nlm.nih.gov/pubmed/19190009
From what the studies show, if it were me, I wouldn't have an SNB if I was having a lumpectomy for DCIS, unless my pathology indicated a high risk that invasive cancer might be present. For me, it's a question of risk vs. benefit. After an initial diagnosis of DCIS, once all the surgery is done, approx. 15% of women will be found to have some invasive cancer as well, either a microinvasion or something more. This risk is higher for those who have large amounts of high grade DCIS and comedonecrosis; the risk is lower for those with less aggressive pathologies. If a microinvasion is found, there is approx. a 10% chance that some cancer cells will have moved to the nodes. So for the average woman with DCIS (i.e. not someone with a large amount of high grade DCIS), there is a 1.5% chance that some invasive cancer will be found and the cancer will be in the nodes. On the other hand, the risk of developing lymphedema from having an SNB ranges from 3% to 7% (depending on the study). So the risk of permanent side effects from the SNB is quite a bit greater than the risk that there might be a positive node. And although some microinvasions are missed when the breast tissue is analysed, the majority of microinvasions are found during surgery, so for women who have a lumpectomy, if invasive cancer is found, an SNB can be done afterwards (this is not feasible for those who have a mastectomy and that's why the decision process is different for those having a mastectomy for DCIS). This means that most women who have positive nodes after an initial diagnosis of DCIS will end up with an accurate diagnosis; the positive node(s) will be found. For those few that aren't found (at least until later), the studies seem to all agree that long-term prognosis doesn't change.
As someone who had a microinvasion, and also because I was having a mastectomy, I had no choice but to have an SNB. I can tell you that the pain and recovery from the SNB was a whole lot worse than the pain and recovery from my mastectomy, and from my previous excisional biopsies (i.e. lumpectomies). I had horrible shooting pains down my arm, and my arm down to my elbow and in the underarm area remained numb for 6 months; some women never regain their full feeling. Now I have to be careful with the use of my right arm for the rest of my life (no blood draws, no blood pressure, avoid infection from cuts, etc.). Knowing what I know now, if I could have avoided the SNB, I would have.
Not sure if that is reassuring to anyone, but I hope it helps in at least explaining that there are two valid sides to this debate and no "right" or "wrong" decision.
Edited to add: dsj, I just saw your post after I posted mine.
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Thanks, DSJ and Beesie for posting the additional information. I'm feeling much better this morning about not having had an SNB. I understand that the chance of having microinvasion that was missed was small, and even if there were microinvasion the chance of it having spread to the lymph nodes is small. My surgeon did say that if they found microinvasion he would want me to come back for an SNB (but they didn't find any). Thinking more rationally this morning and having reviewed additional information, and considering the side effects of SNB as Beesie mentioned, foregoing the SNB was a good choice for me. Scary though to think that the microinvasion can be missed, like Zoe's was.
Zoe, I am so sorry that you are having to go through all of this! Scary and difficult, and more than you were expecting, but you will be OK. Hang in there and let us know how you are doing!
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Thanks for sharing your story, but it raises some questions in my mind. I was told by an oncologist friend at MD Anderson that I should request a lymph node sample from my surgeon. However, I am getting a lumpectomy next week, and the surgeon tells me that they do not routinely do a lymph sample with a lumpectomy. I know your situation has taken place over a number of years, but does anyone know how often lumpectomies are performed with a lymph node sampling?
Also, I find it strange that throughout this entire process, no one has taken a blood sample from me. We've done mammogram, stereotactic biopsy, MRI with contrast dye, Sonogram-guided needle biopsy, but yet no blood work has been taken. Shouldn't someone be looking at other things like white blood cell counts, vitamin levels, etc, etc? Or am I off-base?
Thanks for your insights, ladies.
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I think I am obsessing (and I really am; I keep reading medical articles I don't really understand) about SNB because it feels like the one thing anyone has given me a choice about. (I know I have a choice about lumpectomy vs mastectomy, but I never really seriously considered a mastectomy--it just always felt "too much" for what I had). I KNOW the right decision is to not to have the SNB unless I need it, and I keep looking for more articles to confirm me in the decision. It's kind of magical thinking: the more I read it, the more right it will be.
Information helps me feel in control, but it also veers me off to "what ifs." I have had 3 weeks of seeing doctors, reading research, etc. Someone from the office of the first surgeon I consulted about 2 and a half weeks ago (though it feels like a year ago) called me today to check up. I explained that I hadn't scheduled surgery yet because I just felt like I had to hear it all from another doctor. At this point, I'm not really sure what I'm looking for. I feel like I am about to go into information/doctor-overload, and I have to keep reminding myself that whatever I learn about DCIS in a month isn't the same as having an M.D. with specialty in oncology. So hard to keep a balance between educating myself and being my own advocate on the one hand, and trying to be my own doctor on the other.
PS Beesie, thank you AGAIN for making it so accessible and organized.
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dsj - it is hard to sift through all the info. I sit here 2 days post-lumpectomy surfing the net because I want to be prepared for whatever my path report says. For me, lumpectomy felt very right. Best we could determine my 'lump' was 1cm of high grade DCIS. I knew it needed to come out. I am waiting until the path report comes back to decide the rest. I am pretty sure rads is in my future. With high grade I don't think I could not do them and be OK with the risk. Without knowing my surgical margins I am already atleast an 8 on the VNPI. I did do the gentic testing but won't know results until next Wed. I found a surgeon I trusted and am taking it one step at a time. good luck with your decision.
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Marianna, for those who have a lumpectomy for invasive cancer, an SNB will always be done. But for those who have a lumpectomy for DCIS, an SNB isn't necessary. However, to the discussion and links provided in the previous posts, it is sometimes recommended that those who have high risk DCIS (large amount of grade 3 DCIS and/or with comedonecrosis) do have an SNB. But for someone with your diagnosis - a small amount of grade 1 DCIS - I would guess that very few SNBs are done for those having lumpectomies. Does the oncologist friend who recommended that you have an SNB understand your pathology and understand breast cancer specifically? As for bloodwork, no I never had any either. I don't believe that it is routinely done for those who have DCIS or early stage invasive cancer.
dsj, I know exactly how you feel. In the end, you have to listen to your doctors and trust them. Still, getting a 2nd opinion is never a bad thing; it's actually a good thing. If the second doctor confirms what the first doctor recommended, you will feel much more comfortable with that course of action. Alternatively, if the second doctor recommends something different, you will realize that you have a choice and that will allow you to choose whichever course of action and/or whichever doctor you are most comfortable with. As for all the information that you are finding on the internet and on this site, the way I look at it, it's good to educate yourself so that you know what questions to ask your doctor, so that you know if your doctor is suggesting something that is not consistent with standard practices (that sometimes happens, particularly with doctors who are not breast cancer specialists), and so that you know if your doctor is telling you the truth (yup, there are still doctors out there who lie, either because they think the patient can't handle the truth or because they feel that this gives them power). Most of the time, what we find on the internet or on this site simply confirms (and possibly expands upon) what we are told by our doctors. That was certainly the case for me, and that helped me trust and have full confidence in my doctors.
The one caution in searching the internet and checking this site is that it can be difficult, particularly for those who are newly diagnosed and just becoming familiar with breast cancer terminology, to identify situations and examples that are similar to yours (and therefore are relevant) versus those situations and examples that are different from yours (and therefore should be discounted/ignored). One of my pet peeves with this website is that advice can be given by anyone to anyone, even when the diagnoses are quite different. It's unfortunately not unusual to read advice that while well intentioned, is inappropriate, misleading or downright wrong. For someone newly diagnosed, that can be difficult to weed through. I hate to see women become unnecessarily concerned about what someone else said or experienced, when the situation isn't relevant to them at all. Of when women start to worry about why they are or aren't getting a particular test or treatment, just because someone else, with a different diagnosis, got or didn't get that test or treatment. So in the end, it really is your doctors who you have to go back to and listen to and take advice from.
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djs--
If you are having a lumpectomy you do not need to have a sentinel lymph node biopsy. In the low probability event that you have invasive cancer after the lumpectomy, they can do a lymph node biopsy later.
I agree that it is hard to avoid information overload. I did literature searches and read most of the relevant journal articles. I am not an MD but I do work in cancer research and am used to reading this kind of material. Even so, at some point you just have to decide generally what you want to do and who you trust to do it right. Reading medical papers should help you have confidence in those decisions.
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Mom3band1g, I am completely committed to doing radiation. I cannot find a single good reason not to. My feeling is that I have to hit this with everything I've got this time; if it comes back, I'll face that down the line, But of course I don't have my final pathology yet because I haven't had surgery yet because I haven't selected a breast surgeon yet, ad nauseum. I was doing pretty well keeping stuff in perspective til today, when it suddenly became real for me in a different way. I will be thinking about you all weekend and hoping (hoping) you get good news. Please let me know.
Beesie and redsox, thank you so much for your responses--confirmation and advice. I know I'm repeating myself from one post to another, and I appreciate the fact that people nevertheless respond again with support and good advice.
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I'm bumping this one because I just had a bilateral mastectomy on June 24th with SLB due to large high grade comedo necrosis dcis in my left breast. Some of the pathology has come back showing no invasive cancer in either breast but a microinvasion of cancer in the sentinel lymph node. So, how does this happen? If there is no invasion of the ductal carcinoma, how did it get in my lymph node? I am so confused. Also on pathology I found my right breast, which I had been told after mammograms and MRI was cancer free, had foci of lobular carcinoma in situ and atypical hyperplasia. I feel I made the right decision to have the bilateral mastectomy after seeing this in pathology, but so confused as to how that happened. My node is being retested for hormone receptor and her2 status now. My initial biopsy in April showed negative hormone receptors. Now I am worried, did it get in my bloodstream or other nodes? How will they treat this if it is hormone receptor negative? Cannot wait to get rid of the last 2 drains...they are driving me nuts. Can anyone shed some light on this lymph node involvement with dcis?
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maidentiredofwaiting-
dcis with micro-invasion of sentinal-node. here is an uneducated guess. might it be possible that the statement no invasive cancer in the breast was not exactly accurate? that in fact, there was no invasive cancer in the samples taken from which slides were made? I am glad for you that you opted for bmx and that you are soon rid of those drains . hope someone else chimes in.
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I would agree with Jelson, that the most likely explanation (similar to what was being discussed in the older part of the thread) is that they missed a tiny micro-invasion. When they examine the pathology of the breast, they usually take representative cross-sections (especially when it's a large sample), rather than looking at each and every cell, so if the micro was small enough, it could have been missed. Now that they know about the positive node, they will be able to treat you appropriately, even if they never saw the original micro-invasion.
As to the unexpected LCIS and hyperplasia, that usually only shows up on mammogram if there is enough and it is growing rapidly enough for the dead cells to show up as calcifications - it's very common, especially in women with "busy" breasts that it wouldn't show up. Would it have turned into anything down the road? No way to know, but not something you need to worry about now as it has been removed.
((HUGS)) to you as you continue down your path towards recovery!
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Thanks Jelson and Annette47. I talked to my surgeon today and she said they are going to go back and check the tissue to see if they missed a microinvasion. Her other thought was that because I had a large seroma after lumpectomy and there were cancer cells floating around in it for 6 weeks before the bmx, some cells could have migrated to the lymph node. Who knows? But it's hard to wait for all the pathology and not knowing what's next. I see my oncologist tomorrow so maybe she can shed some more light on it. They are retesting the hormone receptors and her2 status now to determine if tamoxifen will do me any good and what other options for treatment I have. This journey is teaching me patience, that's for sure. My 7 yr old can't wait for the drains to be out so we can bear hug.
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My MO says my case was discussed at tumor board and they feel chemo is appropriate. So now I'm getting ready for a port to be put in next week and chemo -ACTH starting the following week. Not thrilled about it but if it gets rid of the cancer, then onward and upward.
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