Mucinous Carcinoma of the breast
Comments
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Nancy....Thanks for the update! Glad you are doing well!
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Great news Nancy!
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Hi Everyone,
I've just finished reading the thread and am (happy?) to join the discussion. I was diagnosed in June of this year, had surgery in July, and am now considering treatment. I first found my lump last summer and had a mammogram and ultrasound but the doctor was convinced it was benign. We asked for a biopsy but he continued to insist that he knew what he was doing and that it was benign. The tumor grew and I could see bruising on my skin so I found another breast clinic, had a biopsy right away, and was diagnosed with mucinous carcinoma (pure). I didn't know much but my sister in law who is an OB Gyn let me know that it was rare but favorable. It was recommended that I go into surgery right away and there was a discussion about neoadjuvant chemo but my surgeon knew that well differentiated tumors might not respond well to chemo.
Surgery went well, 3.2 cm, 0/3 nodes with clean margins. Still a little numb under my arm but healing well and back at work. Met with a couple of oncologists and realized that they were confused by mucinous so I began to really research it myself. I found the Ebony article by DTBrooks which then led me to this website and forum. I now move forward with confidence in speaking with doctors and while making decisions are not easier, at least I feel informed. The last thing your doctor wants to hear is "I diagnosed myself on the internet" but you women have done so much work that is inspiring and uplifting to new people stumbling for knowledge like me.
Through the NCCN Guidelines I've also learned of City of Hope and will see someone there this week. Since they are part of the NCCN, I hope to be able to have a real discussion about my options with someone who understands this rare type we have.
My oncologist requested a mamma print which my doctors prefer over oncotype however I cannot find much info... Does a mamma print work well with mucinous and what are the score categories? Mine came back intermediate but I don't really have a context for what that means.
Voracious Reader, since you are collecting data, I am Korean, age 47. Interesting that Asian women might be getting this type of cancer a decade or two younger than the known median age. The good news is that all of my girlfriends are running to get mammograms. I feel so thankful, knowledge is power!
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Contemp Oncol (Pozn). 2014; 18(2): 120–123.
Published online Jun 3, 2014.doi: 10.5114/wo.2014.42727
PMCID:PMC4068815Mucinous breast cancer – clinical characteristics and treatment results in patients treated at the Oncology Centre in Kraków between 1952 and 2002
Go to:Abstract
Aim of the study
To present the characteristics and clinical outcomes in 94 patients with mucinous breast cancer treated at the Oncology Centre in Krakow between 1952 and 2002.
Material and methods
Stage I or II carcinomas were found in 66 patients (69.4%) of the presented group and in the remaining 28 patients (29.8%) stage III disease was diagnosed. In 27 cases regional lymph nodes were involved. All patients had been treated with surgery: mastectomy (90 patients) or breast-conserving treatment (4 patients). Radiotherapy was administered in 14 patients, adjuvant chemo-therapy in 14 patients, and endocrine therapy in 39 patients.
Results
The maximum follow-up was 257 months. Ten-year survival was as follows: 75.7% (overall survival), 82.5% (disease-free survival). During the follow-up, 4 patients developed local recurrence, 5 patients developed metastases. Second primary cancer was found in 8 patients.
Conclusions
The presented results confirm the good prognosis in patients treated for mucinous breast cancer. The diagnosis of early-stage breast cancer based on mammography can allow breast-conserving treatment.
Keywords:mucinous breast cancer, mastectomy, breast-conserving treatment, second primary cancer
Go to:Introduction
Pure mucinous breast cancer represents approximately 1–4% of all malignant breast carcinomas. This type of cancer is most commonly diagnosed in women aged 55–60 and above [1–9].
The microscopic assessment of the cancer presents cell clusters floating in mucus lakes, separated by thin epithelial membranes containing capillaries. The clusters differ in quantity and in some cases tend to form tubular structures. The cancer cells indicate low nuclear atypia. The above characteristics are dominant in 90% of pure mucinous cancer cases. In mixed form, the ductal carcinoma component is present additionally. Mucinous breast cancer has been defined as low grade cancer with the presence of hormone receptors (oestrogen in 91–94%, progesterone in 79–81%) and lack of HER2 amplification. Lymph node metastases are rarely seen clinically in this form of cancer. All the factors are linked with favourable prognosis [1,2,4,5,9,10].
Mucinous breast cancer is usually diagnosed in relatively early stages of the disease [2,6]. In approximately 50% of patients, physical examinations indicate the presence of a well-circumscribed tumour in the breast. For the remaining 50% of patients, in whom clinical symptoms are not present, the form of cancer is diagnosed during screening mammography. Its image resembles benign lesions. In such cases histopathological examinations are decisive [5,11,12].
In comparison to the infiltrating ductal carcinoma of the breast, pure mucinous breast carcinoma portends a less aggressive clinical course. Ten-year disease-free survival rates are over 90% [13–15].
Go to:Aim of the study
The purpose of this study is to present the characteristics and the results of the treatment of patients suffering from pure mucinous breast carcinoma treated over a 50-year period at the Oncology Centre in Kraków.
Go to:Material and methods
In the period 1952 to 2002, 94 patients were diagnosed with pure mucinous breast carcinoma at the Oncology Centre in Kraków. These cases represented 0.7% of all (13,571) patients treated for breast cancer in this period.
Table 1presents the clinical characteristics of the discussed group of patients.
Table 1The clinical characteristics of 94 patients with pure mucinous breast cancer treated at the Oncology Centre in Krakow between 1952 and 2002
The age ranged from 32 up to 85 years and was on average 64 years (median age: 67). Cancer symptoms (presence of a tumour in the breast) in 83 patients (88.3%) preceded recognition by 1–24 months and lasted for approximately 6 months. In 11 patients (11.7%) breast cancer was recognised by prophylactic exams.
The extent of cancer presented in the study was based on the presently adopted TNM classification of breast cancer at the time of treatment planning.
The majority of patients (60 patients – 63.8%) were diagnosed with stage T2 cancer.
In 67 (71.3%) patients, no lymph node metastases were noted. For the remaining 27 patients (28.7%), metastases of lymph nodes were indicated: 1–3 lymph nodes in 15 patients, 4 or more in 12 patients.
Clinical staging was defined as follows: stage I – 15 patients (16%), stage II – 51 patients (53.4%), stage III – 28 patients (29.8%).
Table 2presents the treatment methods.
Table 2Treatment methods in 94 patients with pure mucinous breast cancer treated at the Oncology Centre in Krakow between 1952 and 2002
All the patients suffering from mucinous carcinoma received primary surgical treatment. In 90 patients (95.7%) a mastectomy was performed, using either Patey's method (60 patients) or Halsted's method (30 patients). In the remaining 4 patients (4.3%), breast-conserving treatment was introduced (tumour resection and axillary lymphadenectomy). In this group of patients post-operative, adjuvant radiation treatment was provided. Radiotherapy was performed in 25 patients (26.6%).
Fourteen patients (14.9%) were treated with adjuvant chemotherapy, whereas 39 patients (41.5%) received endocrine therapy with tamoxifen.
In the follow-up period the incidence of complications and treatment failures was assessed. The presence of second primary cancers was also investigated. The 10-year overall and disease-fee survival rates were assessed. The Kaplan-Meier estimation was used for this purpose.
Go to:Results
In the studied group the follow-up lasted a maximum of 257 months (median: 106 months).
The actuarial 10-year survival rates were as follows: overall – 75.7%, disease-free survival – 82.5%.
Figure 1presents the disease-free survival rates.
Fig. 1The disease-freee survival in 94 patients with mucinous breast cancer
In the follow-up period, complications after treatment were observed in 15 patients (16%). In 11 patients upper limb oedema on the operated side was observed. One patient (1.1%) suffered from venous thrombosis, 3 patients (3.2%) from endometrial hyperplasia of the uterus. All patients received systemic adjuvant treatment.
Table 3presents the causes of treatment failures.
Table 3Failures in 94 patients with pure mucinous breast cancer treated at the Oncology Centre in Krakow between 1952 and 2002
In 4 patients (4.3%) local recurrences were noted within 18–43 months (approximately: 33 months) after breast cancer treatment.
The development of distant metastases was observed in 5 (5.3%). It occurred within 5–169 months (approximately 77.8 months) after treatment. Metastases were most frequently localized in lungs (4 patients).
In 8 patients (8.5%) second primary tumours were noted, among which 3 were localised in the opposite breast. The other localisations were: uterus (2 patients), cervix (1 patient), lung (1 patient) and non-Hodgkin's lymphoma (1 patient). The above neoplasms developed 24–126 months (approximately 76 months) after the treatment of mucinous breast carcinoma.
Go to:Discussion
Pure mucinous breast cancer has positive prognostic features. According to the literature, 5-year and 10-year survival rates are: 77–92% and 75–89% (overall), and 76–91% and 74–93% (disease-free) [2,4,12,16,17].
The obtained results are comparable to the above. Ten-year survival rates were: 75.7% (overall) and 82.5% (disease-free survival).
In approximately 50% of the patients, mucinous breast carcinoma is diagnosed by palpation, whereas in asymptomatic cases the cancer is diagnosed after mammographic screenings [11,12].
In the studied material, for the majority of patients (83 from 94 – 88.3%) the main symptom of the cancer was an examined tumour in the breast. In the remaining 11.7% of the patients the neoplasm was diagnosed in a mammography examination. Differences between the studied and the previously published data exist due to the fact that the studied material comes from a period of 50 years, i.e. 1952–2002. Over this period diagnosis and treatment rules changed due to the development of medicine. This can be confirmed by the observations made of the patients suffering from mucinous breast cancer treated at the Oncology Centre in Krakow in the 1952–2010 period, presented inTable 4. The period 1952–2002 is the subject of the study. In more recent years, i.e. in the period 2003–2010, mucinous breast carcinoma was detected in mammography screenings (34% of patients).
Table 4Frequency of breast cancer diagnosis during screening mammography and frequency of breast-conserving surgery in patients with pure mucinous breast cancer in material of the Oncology Centre in Krakow
Mucinous breast carcinoma is most often diagnosed in older patients, aged 55–60 and above [2–9,16]. The characteristic feature of this type of cancer is that it can be diagnosed in relatively early stages of the disease. A stage T1–2 tumour is diagnosed in 93–97% of patients, whereas the lack of metastases to lymph nodes is observed in 62-88% of patients [4,13,14,16–19].
In the studied material stage T1–2 was present in 74.7% of patients, whereas the lack of metastases to lymph nodes (pN0) was observed in 71.3% of patients. In case of the presence of metastases to lymph nodes 16% of patients suffered from metastases of 1–3 lymph nodes. According to data from the relevant literature, the presence of metastases in 1–3 lymph nodes is diagnosed in 10–11% of patients suffering from mucinous breast cancer [2,19].
The results of multivariate analysis presented in the literature by Di Saverioet al. and Voet al. indicate that particularly good prognosis in patients suffering from mucinous breast cancer is associated with the following independent factors: age, tumour size, status of lymph nodes and oestrogen receptor [2,4,14]. The significant influence of the status of the lymph nodes on the treatment outcome was indicated in a previous publication published by our institute, in which the results of a group of patients treated in the years 1952–1979 were presented. The cancer-free survival rate drops by two-thirds with recognition of the incidence of lymph node metastases (26.7% vs. 83.3%) [20].
Diabet al. observed convergence between the size of the primary tumour and the status of lymph nodes in a group of 111 patients with mucinous breast cancer. In the case of tumours below 2 cm in size, in 90% of the patients metastases to lymph nodes were not indicated. Increase in tumour size corresponds with a decrease in the percentage of negative lymph nodes, to the extent that in the case of tumours over 5 cm in size it equals 56% [2]. As a result, the number of performed lymphadenectomies and the application of systemic treatment in early mucinous cancer deteriorates. The primary method of treatment in patients suffering from the studied diagnosis is surgical treatment with post-operative adjuvant treatment: radiotherapy, chemotherapy, endocrine therapy.
In the presented material 90 out of 94 patients (95.7%) were treated with a mastectomy (Patey's method in 60 patients, Halsted's method in 30 patients). In the remaining 4 patients (4.3%) breast-conserving treatment was introduced.
According to the data from the literature breast-conserving treatment is employed in over 60% of patients suffering from mucinous breast cancer [13,18]. The difference with the studied material, in which this procedure involved only 4.5% of patients, could reflect the period of the study, i.e. 1952–2002. Over this period both the methods and the spectra of treatment, along with the indications, changed. This conclusion was indicated in a prior publication of the Oncology Centre, in which a mastectomy had been performed in all patients [20]. In contrast,Table 4presents a significant increase in the employment of breast-conserving treatment in patients with mucinous breast carcinoma during the years 2003–2010, which was 35.8%.
The data concerning the incidence of radiotherapy indicate that it was performed in 31–90% of patients [4,13,14,17]. This could be the result of the frequency of breast-conserving treatment, during which radiotherapy was an integral part. In the studied material, in which mastectomy was a dominant procedure, 26.6% of patients were treated with radiotherapy.
According to the literature, the use of adjuvant, systemic treatment is comparable with the studied material, with frequencies of 10–37% and 14.9% (chemotherapy), and 33–84% (endocrine therapy) [2,4,18,19].
Voet al., Liet al. and Baeet al., when comparing various histological cancer types, indicated that the involvement of systemic treatment in patients with mucinous breast cancer is less frequent than in patients with ductal breast cancer [4,13,17].
In the presented group of patients, 4 out of 94 (4.3%) indicated local recurrence, whereas in 5 patients (5.3%) the cancer spread. According to the data, local and distant failures in patients with mucinous breast cancer are rare and concern less than 5% of the patients [4,18]. Diabet al. and Voet al. claim that the decisive risk factor for the development of the failures is the presence of lymph node metastases [2,4]. Furthermore, as was indicated by Voet al., the failures are less frequently noted in patients with mucinous breast cancer in comparison with other histological types of breast cancer [4].
The studied observations and data from the literature indicate the good prognosis in case of mucinous breast carcinoma. Mammography screenings enable cancer to be detected at an early stage, which leaves the possibility of introducing breast-conserving treatment.
The authors declare no conflict of interest.
Go to:References
1.Lakhani SR, Ellis IO, Schnitt SJ, et al.World Health Organization Classification of Tumours.4th ed. Lyon: International Agency for Research on Cancer; 2012. WHO Classification of tumours of the breast.2.Diab SG, Clark GM, Osborne CK, Libby A, Allred DC, Elledge RM. Tumor characteristics and clinical outcome of tubular and mucinous breast carcinomas.J Clin Oncol.1999;17:1442–8.[PubMed]
3.Thurman SA, Schnitt SJ, Connolly JL, Gelman R, Silver B, Harris JR, Recht A. Outcome after breast-conserving therapy for patients with stage I or II mucinous, medullary, or tubular breast carcinoma.Int J Radiat Oncol Biol Phys.2004;59:152–9.[PubMed]
4.Vo T, Xing Y, Meric-Bernstam F, et al. Long-term outcomes in patients with mucinous, medullary, tubular, and invasive ductal carcinomas after lumpectomy.Am J Surg.2007;194:527–31.[PubMed]
5.Reimer T. Management of rare histological types of breast.Breast Care (Basel)2008;3:190–6.[PMC free article][PubMed]
6.Li CI, Uribe DJ, Daling JR. Clinical characteristic of different histologic types of breast cancer.Br J Cancer.2005;93:1046–52.[PMC free article][PubMed]
7.Karan B, Pourbagher A, Bolat FA. Unusual malignant breast lesion: imaging-pathological correlations.Diagn Interv Radiol.2012;18:270–6.[PubMed]
8.Cyrta J, Andreiuolo F, Azoulay S, et al. Pure and mixed mucinous carcinoma of the breast: fine needle aspiration cytology findings and review of the literature.Cytopathology.2013;24:377–84.[PubMed]
9.Laucirica R, Bentz JS, Khalbuss WE, Clayton AC, Souers RJ, Moriarty AT. Performance characteristics of mucinous (colloid) carcinoma of the breast in fine-needle aspirates: observations from the College of American Pathologists Interlaboratory Comparison Program in Nongynecologic Cytopathology.Arch Pathol Lab Med.2011;135:1533–8.[PubMed]
10.Work ME, Andrulis IL, John EM, et al. Risk factors for uncommon histologic subtypes of breast cancer using centralized pathology review in the Breast Cancer Family Registry.Breast Cancer Res Treat.2012;134:1209–20.[PubMed]
11.Dhillon R, Depree P, Metcalf C, Wylie E. Screen-detected mucinous breast carcinoma: potential for delayed diagnosis.Clin Radiol.2006;61:423–30.[PubMed]
12.Tan JZ, Waugh J, Kumar B, Evans J. Mucinous carcinomas of the breast: Imaging features and potential for misdiagnosis.J Med Imaging Radiat Oncol.2013;57:25–31.[PubMed]
13.Li CI. Risk of mortality by histologic type of breast cancer in the United States.Horm Cancer.2010;1:156–65.[PubMed]
14.Di Saverio S, Gutierrez J, Avisar E. A retrospective review with long term follow up of 11,400 cases of pure mucinous breast carcinoma.Breast Cancer Res Treat.2008;111:541–7.[PubMed]
15.Komaki K, Sakamoto G, Sugano H, Morimoto T, Monden Y. Mucinous carcinoma of the breast in Japan: a prognostic analysis based on morphologic features.Cancer.1988;61:989–96.[PubMed]
16.Morand C, Verrièle V, Valo I, Remoue P, Paillocher N, Chassevent A. Pure mucinous carcinomas of the breast: prognostic study including DNA flow cytometry.Clin Cytom.2009;76B:56–62.[PubMed]
17.Bae SY, Choi MY, Cho DH, Lee JE, Nam SJ, Yang JH. Mucinous carcinoma of the breast in comparison with invasive ductal carcinoma: clinicopathologic characteristics and prognosis.J Breast Cancer.2011;14:308–13.[PMC free article][PubMed]
18.Barkley CR, Ligibel JA, Wong JS, Lipsitz S, Smith BL, Golshan M. Mucinous breast carcinoma: a large contemporary series.Am J Surg.2008;196:549–51.[PubMed]
19.Cao AY, He M, Liu ZB, et al. Outcome of pure mucinous breast carcinoma compared to infiltrating ductal carcinoma: a population- based study from China.Ann Surg Oncol.2012;19:3019–27.[PubMed]
20.Stelmach A, Reinfuss M, Smolak K, Mitus J. Śluzowaty rak sutka. Obraz kliniczny, leczenie i rokowanie.Nowotwory.1992;42:151–5.
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lahelena....Happy (
) you have found this thread on Breastcancer.org's discussion board. I try to collect all relevant info regarding mucinous breast cancer and put it HERE, so patients need not go on an expedition on the internet. I'm glad to hear from you and from other patients that the data has helped make an informed treatment decision with physicians. When I was diagnosed, I saw what little info there was regarding mucinous breast cancer and decided to place all the info here for future patients.Now, with respect to yourself, as you know, the Oncotype DX test is being used for mucinous breast cancer patients, although it hasn't been as STRONGLY validated for us as it has been for traditional IDC. That said, having a score in the dreaded intermediate range does require further analysis. I also agree that if a score is "intermediate," then it would be wise to have the Mammaprint test. Is the Mammaprint test more strongly validated for mucinous breast cancer? I don't know. But, as you say, knowledge is power. Perhaps the Mammaprint test will be more definitive than the OncotypeDX test.
Having read the NCCN guidelines, you do know that one should "consider" chemo if the mucinous tumor is over 3 cm. So, going into your meeting, you will have to do lots of "considering." I would strongly recommend that your case be presented to the hospital's tumor board committee. In cases like yours, being "young" and having a tumor over 3 cm, you should have MANY opinions. I think the Mammaprint's findings are key to helping you decide.
Now, with respect to your young age....it seems that many of those who make it to this thread and chime in, are young. At 53, I was also "young" at diagnosis. I think, like yourself, in general, women are more proactive today and are therefore getting diagnosed earlier than they would have a decade or two ago. Since most mucinous breast cancers are slow growing, patients could have them growing for many years before they are noticeable by touch or by screening which might not occur before women are in their 50's.
Finally, regarding what your family member mentioned to you about being "rare and favorable"...as you know by now, you do have excellent prognostics. So, lucky for you, you have many more choices than patients with more aggressive tumors.
Keep us posted with your decision. I wish you well!
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.....one more thought...the preliminary results for the SOFT and TEXT trials should be known later this year. Earlier this year, at the annual ASCO meeting, physicians were encouraged by the use of ovarian suppression with an aromatase inhibitor, rather than Tamoxifen and ovarian suppression. I think if you are premenopausal and are highly ER positive, you might consider ovarian suppression. ANNICEMD started another thread, Stage 1, Grade 1, Premenopausal. It seems many patients, including me, chose that treatment as part of our overall plan. Please read her thread as well!
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....There are just two categories for Mammaprint. Either chemo benefits or it doesn't. So for those people who get intermediate OncotypeDX scores, the Mammaprint is getting more patients either into or out of the chemo benefit range.
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Voracious- thanks for posting the great article and other info!
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N....I really wish there was more info out there with respect to patients who have the more aggressive types of mucinous breast cancer. That said, I like these retrospective studies. They are helpful. I think, now that we are entering a digital period in medicine, the record keeping is improving. These retrospective studies will become easier to accumulate, hopefully leading to better and more personalized care....especially when they begin to include genomic info!
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Thank You voracious! Very informative. Indeed it would be beneficial if there were more info. regarding the more aggressive type.
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VR I see my MO on the 28th and I plan to have an I depth discussion with her regarding ovarian suppression. I've asked about it before and felt a bit blown off. I'm 100% ER and PR positive. My Gyno is convinced that I should remove my ovaries. My MO thinks tamoxifen is enough. I personally feel like the Ovarian suppression is what is needed.
Any suggestions on how to emphasize my point to the MO?
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VR thank you for writing back so quickly! I have noticed that a lot of women on this forum are younger. I met with a radiation oncologist last week who told me she had just moved her practice to Los Angeles and was shocked that the median age of her patients in LA was 30 years old!!! So scary.
Thanks for the info on mammaprint, I asked for an oncotype before knowing that a mammaprint had been ordered and apparently insurance only covers one or the other. Do you know if the mammaprint is verified for mucinous? And thanks for the referrals to other forums, I'm just finding my way to others but it is really overwhelming as there are thousands! I'm ER+ 99%, PR+ 98% so really interested in learning more about hormone options even though that part of treatment is also so scary to me. Interesting the studies on melatonin / tamoxifen. I'm a late night person and I wonder if my irregular sleep patterns have anything to do with this. I will also ask the new doc this week about tamoxifen gel to see if he has any more knowledge of this and the trial period.
I'm confused by the NCCN professional guidelines, honestly at first pass it's difficult for me to find the pages where my focus should be, would you mind directing me to those pages? I have looked through the NCCN PATIENTS' guidelines and they say no chemo for any size tumor as long as the nodes are clean. Do the professional guidelines contradict this or go into it further? If mucinous does not respond well to chemo, why consider it just because tumor size is bigger, because it's been in the body longer? Has anyone known anyone who developed mucinous in other body parts originating in the breast?
I found some TED talks that I found really interesting, if anyone wants to look them up Google TED talk, cancer. I'll figure out how to post a link here and do that too. ;o)
Thank you all again!
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Sunshine, have you had your GYN contact your MO about this and share their thoughts?
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helena....on the NCCN website go to the PROFESSIONAL version of the breast cancer guidelines...it has a red logo beside it. Then....read the tubular and mucinous breast cancer treatment page. THEN.....scroll down to page 99 and read about endocrine therapy.
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sun.......I agree...have gyno contact onco.
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lahelena- I just wanted to say welcome and I am sorry you are going through this. I had a double mastectomy on august 13 for my mucinous tumor. I am awaiting all of the final pathology. I learn something every time someone posts on here. Please keep us posted on your story!
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Oh Greenpastures! Are you doing ok? Please check in and let us know! (((hugs)))!
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helena....page 21 of the 2014 NCCN professional version of the breast cancer guidelines contains a "v" footnote. Read the footnote carefully. The reason why I say you need to "consider" chemo is that the recommendation points to considering ovarian suppression, while there is no evidence at this time that it is superior to chemo. While it clearly recommends chemo for node positive tumors, it doesn't rule out some kind of additional treatment. I also want you to know that over the last few years, the recommendations have become more lax...that is, moving away from chemo. If you scroll down to page 100, it discusses "systemic adjuvant therapy" in detail. I think you have lots of choices ahead. Chemo? Ovarian Suppression? AI? Tamoxifen? Five years? Ten years? All of these options need discussing. Unfortunately there is no right or wrong answers.
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green....hope you recover quickly. Please let us know how you are doing!
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I am doing really well, thank you for asking! The recovery from surgery has been much easier for me than I expected. I am having a little trouble with what feels like a muscle cramp under the arm where the 2 nodes were taken. It kind of feels like a hard wire when I push on the area. I read about cording. Did anyone else have this? I see the surgeon Wednesday and will ask him.
I also wanted to mention that I tried posting on a couple of very active Facebook groups for breast cancer to see if anyone else had mucinous breast cancer. I got no replies. I guess we really do have a rare form. So glad to have you ladies!
I will post again when I know the final pathology. I am sure I will have tons of questions at that point. Thank you!
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Green,
you sound as if you are faring quite well! Doing a happy dance for you! You are right. There isn't nearly as many recorded cases of our type. But, knowledge is power, and I am trying to discover whatever means that will help our rare quandary!
Keep us posted! We care!
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green....yes! What you are feeling is cording! I had it. You should get a prescription for physical therapy. Also massage it a few times a day. It will improve over time. I sure wish that surgeons would warn patients about frozen shoulder and cording issues ahead of surgery!
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Green glad you're doing well!! Like VR said I'd wish they'd warn us about frozen shoulder and cording issues! I ended up getting two cortisone shots and I'm still not 100% in that arm.
Who would think that something so tiny as lymph nodes could be so stinking painful!
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sun....sorry you are having issues too! I wish you well too!!!
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So sorry you are having cording problems. I had that but mine resolved pretty quickly with just the arm stretching exercises I was advised to do.
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Greenpastures, is frozen shoulder the numbness you feel after node surgery? I did not expect it, I thought I'd be back at work after a long weekend following surgery, ha! Recovery from the nodes did me in! After 7 weeks the numbness is not as noticeable but my surgeon says it could take months before it's completely back to normal.
Sunshine, looking forward to what you learn about ovarian suppression and will check out ANNICEMD's thread (thanks VR!). I saw a gynecological oncologist the other day and (in her opinion) she did not feel that removing ovaries extended the survival period of patients and could lead to other problems. Again, her opinion.
Yesterday I had my first appointment with an oncologist at City of Hope. I found the doctor to be kind and relatable and he knew more about mucinous than my previous oncologists which made me feel like I could have a real discussion. Unfortunately he is confused by my condition. I have all the characteristics of mucinous but then this high Mammaprint... He wants to resubmit for an Oncotype since that's the test they prefer. I asked him about Oncotype not being verified for mucinous but he didn't have an opinion, just thought that might be because there aren't enough mucinous patients. He believes that I'm either mixed or the Mammaprint might be off. They're going to re-analyze my slides to confirm pure or mixed and send off for the Onco. If the pathology reveals pure mucinous and the Onco score comes back intermediate - high, he'll present my case to the tumor board. Meanwhile we wait 3 weeks.
I'm not gonna lie I'm kind of freaked out but we'll see what happens. I recall reading other women's posts who were pure with a high Onco score so I'll go back and reread.
Thanks again everybody and I look forward to following everyone's progress. VR, the information you provide is priceless, Many Thanks!
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Hi Lahelena. I'm glad your new oncologist is having your slides reevaluated. That may help give you peace of mind moving forward. The really hard part is waiting to figure out a plan. But it sounds like you have an onc who wants to be thorough, which is great. I felt the same way about my docs, but I still feel like it took forever to start treatment.
I will be honest, I still have moments when I am a little freaked out and I just finished my last round of chemo (which I tolerated very well) this week. I feel mostly positive and hope time will help with the "freak-out" moments! I'll be starting tamoxifen soon and am just planning on that going well too.
I'll be sending good thoughts!
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Grace...all of us have those "freak out" moments. Honestly, for the first few years I trembled at the sight of the word "oncology." However, slowly I entered the "new normal." Today, my life is so busy and full that I rarely go to a dark place in my mind...and those few times that I do go, my bad thoughts are usually about something else. Cancer may still be a part of my life, but it no longer defines me. I truly wish you and all sisters well.
Helena.... Your oncologist is correct with respect to the OncotypeDX test. It isn't as "strongly" validated for mucinous breast cancer patients, although it is still validated due to the fewer number of mucinous samples. That said, there was a statistically significant number of mucinous samples in the pool. Furthermore, as more mucinous patients have the OncotypeDX test. those tumor samples are adding to the calculation making the test for mucinous sisters more and more accurate. My score of "15" was the exact number of the OncotypeDX average score for mucinous samples when the test was developed. In the few years since I had the test, the average score of "15" has held steady. So...the average score for mucinous bc continues to be validated.
I think the most important thing is confirmation of the pathology. That info will ultimately drive your active treatment. Seems like you are now in great hands. I wish you well. Keep us posted while we keep you in our thoughts and prayers!
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Golden01 - So glad you chimed in! Please jump in here anytime with any words of experience or just to say HI!
VR - Thank you for that OncoType info. I just know my Onc was so concerned considering my mucinous/colloid dx. She, like probably so many, are still learning about this kind. It is great that it is making its way into the realm of further study and investigation.
But so I am clear; is the onco test for Mucinous, appearing to be prominently more accurate than possibly other types? Thank you for any info VR. Your in-depth explanations are so very much appreciated! You're the best!
Green - hope you are recovering better and quicker everyday! Thinking of you!
lahelena- so much info...so few hours in the day...lol, at least for me! Thinking of you as well!
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alive...the OncotypeDX test is strongly validated for traditional types of IDC and ILC. For the special "favorable" histologies that include mucinous and tubular, it IS validated, but not as STRONGLY. Now that the test is more widely used, there are now more mucinous samples that can further validate the OncotypeDX score.
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