Mucinous Carcinoma of the breast
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Hello ladies, I hope everyone is well. In Canada, we are getting ready for the long weekend of Thanksgiving.
Obsolete, I just had the results of my second bone scan: CLEAR!!! I am feeling dizzy with relief!
Sending you positive vibes!
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rain...great news! Enjoy the holiday! I have maternal Canadian family. Since the border is closed... mind sending my love to them?
I miss them. Growing up we got to celebrate both Canadian and American Thanksgivings together. We also celebrated Christmas break, Passover and summers as well0 -
Thank you, voracious... I will certainly do. Fall is absolutely stunning, as I am sure you remember. I have forgotten how it is to travel... There are so many people to see, places to go ... We got used to doing it virtually, but it's not the same. I'll take a walk in the woods and along the river and I'll think of you and of our journey sisters with all the might of this majestic autumn. Blessed thoughts!
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rain! Thanks! Enjoy your walks. I walk a lot too! I don’t have to think that far back to remember seeing my Canadian family. Last summer, I visited Toronto and Montreal. Seems like yesterday....
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That is fantastic news, Rain, as you enjoy your celebratory Thanksgiving weekend up there. Ahh yes, we've all been missing our neighbors north of the border.
Hoping you and VR both have an outstanding holiday weekend. Peace, comfort & cheers to all.
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Thank you, Obsolete (I always thought it is such an interesting alias!). To you too, a wonderful weekend and a serene autumn.
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Rejoicing with you Rain88 at your ALL CLEAR bone biopsy. I have been thinking of you and praying for you especially each time I get a bone ache and it triggers my memory to get praying. Thinking of you all you MC sisters as you deal with all the up & downs of life plus Covid 19. We are especially fortunate in Sth Australia with no Covid cases from Community transmission just 3 or 4 per week in Quarantine from overseas travellers returning. Blessings on your health and safety.
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Thank you, Tricianne, for your steadfast support and kindness. I feel particularly blessed this Thanksgiving, as the good news coincide with my wedding anniversary and my son's birthday. What is changed, is that I can look now at my sons and hope for many years to come and continue to enjoy their beautiful presence in my life. And, yes, all the aches and sores I dismiss them almost joyfully! It is a glorious day of autumn! I hope all of you, ladies, are doing well and taking good care of yourselves.
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Hi all,
VR I just wondered what you meant by the 'sweet years'. Are you having mri for local breast issues or full body scans for mets....
Sorry if this is intrusive it just has played on my mind since you mentioned it. Hope you're well.
In England on the NHS it's a mammogr and physical with a nurse for 10 years I think, for eorly stages.
Very strange times at the moment
Hope all you global sisters are coping and keeping your spirits lifted somehow xx
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wobbly....IMHO, my radiologist is peerless. He was the one who found my tumor that was sitting in plain sight for three years. Other radiologists dismissed it as a cyst. I was sent to him by my ob/gyn doctor because my breasts were so dense and cystic. After properly diagnosing me, he has owned by breasts since. Almost 11 years.
With all of that said, I have never had a whole body scan. Before my initial surgery, I had an MRI that also found a drop of DCIS. I had been having mammograms and sonograms since the tender age of forty. Once diagnosed, the radiologist followed all of he recommended screenings for the first five years. NED, afterwards, I was put on annual mammos and sonograms. The sonograms were especially important because they saw the tumor, not the mammos. Cruising through my fifties, the cysts finally resolved and I grew more comfortable with the imaging because there was nothing to “see.” At sixty, the radiologist said, I now entered the “sweet spot.” That was the decade and a half that most women would be diagnosed with breast cancer. So because I was diagnosed at a relatively young age, 53, my risk of getting a breast cancer in my sixties or seventies was greater than someone who never had cancer. So now, he wants me to have MRIs every 18-24 months.
hope that clears your mind and emotions of those dark thoughts.....Breast cancer has now receded to a far off place in my being...it is an “old” new normal and I feel blessed that the journey has taken me there....
Wobbly, I hope you and the rest of our sisters can get to that place...my prayers that everyone get there, sooner than later....
stay well and safe...and happy..0 -
Hi there, Im 7 weeks diagnosed and its been quite a ride. I am 50 yrs old. In fact just turned this year. After a mammogram which found calcifications on my right breast. I had 16 biopsies as the ultrasound picked up another suspicious area that the mammogram didn't. It all came back as positive for grade 3 dcis. I then had a lumpectomy which the doctor removed a larger area than he thought he would. In this area a 1.6cm pure Mucinous invasive tumour was found. This tumour was a complete surprise to me and my consultant. Apart from this he did not get the margins on 3 sides of the lumpectomy. I immediately had a lymph node biopsy and a nipple biopsy (to see if we could save the nipple). I am now waiting on these results. Regardless of the results I have opted for a mastectomy on the right side. Im actually pretty resolute that I want the other breast removed as well. Im completely paranoid as this tumour was missed in ALL the screening. I just am so anxious about it all. Im reading a lot that Mucinous cancer hardly ever involves the lymph nodes. But I feel my luck is rotten. I know it will ultimately all be fine. And we have luckily found it all so early. Really dreading next week though.
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Dingley, it does look like a lot going on in such a short time! To be honest, I have never heard before of someone having 16 biopsies! I am sorry you didn't get clear margins. I am assuming the DCIS was rather extensive? I was diagnosed a year and a four months ago with Mucinous carcinoma. I had lumpectomy to remove a 1.1 cm tumor and luckily I had clear margins. The pathology also showed DCIS (which my understanding is it's common) and ALH. I had no node involvement, as it is most often the case with MC. After being diagnosed, I clearly remember that I was considering having both my breast removed. However, now I am glad I didn't go ahead with it, because with bilateral mastectomy, there are significant long term side effects. We are about the same age. I will turn 50 in a couple of months. While being diagnosed with breast cancer turned my life upside down, I can say that time does have a way to slow down the torent of dark thoughts and put life in perspective. So hang on! I am hoping with you for good results. Love and Hugs
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Hello Dingley and Hello Rain! Welcome, please don't feel alone as you're in good company here. Once you have your results, surgery & treatment plan, your now stressful life will ease up. I began my experience almost 7 yrs ago with Grade-3 DCIS, followed by several surprise mixed Mucinous tumors & Invasive Solid Papillary. I had the lumpectomy first, followed by a double mastectomy, for which I have no regrets 6 years later. For me, the BMX was easier than the LX. I hope you all have a Happy Thanksgiving holiday.
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Thanks Rain and Obsolete, just had a call from my consultant. Lymph nodes clear but I am her2 positive and oestrogen positive. Mastectomy cancelled. so 7 rounds of of chemo. Then mastectomy. Shocked and sad. The journey will be longer than expected.
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I am so sorry to hear that, Dingley.
As rare as MC is, to be HER2+ is even more rare... I know there are others with it who have posted here, but because it is so rarely heard of, I would consider having a second opinion, just to make sure there had been no errors.
My heart goes out to you. Hugs and Love.
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Just had my yearly mammogram and ultrasound, NED Birads 1!!! It is so stressful, so relived and thankful. It has been 4 years and three months since my lumpectomy on 9/23/16. My diagnosis was a 7mm pure mucinous tumor, 95% pos Estrogen and Progesterone, HER-2 neg. grade 1, stage 1b, lumpectomy and radiation. I was on Arimidex for 2 year, could not tolerate. Onxcotype was 31, but is not always accurate for pure mucinous. I have an ultrasound every 6 months. I exercise constantly, watch my diet and try to stay stress free, even though I have a husband with Alzheimer’s . It is wonderful having others going through this journey.
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@thecargirl, this is wonderful news! We can all relate to the anxiety and the relief. I wish you only NED year after year.
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Hi Dingley, As Rain had so wisely suggested, please obtain a 2nd opinion from a dedicated breast pathologist on detailed characteristics. Ask pathologists for your Progesterone Receptor %. Ask if there was any lympho-vascular invasion & if nuclear subtype was Luminal A or Luminal B, which are strong prognostic factors. You can also ask for a CTC liquid biopsy to check for any circulating tumor cells and request a Foundation One (or similar) evaluation & sensitivity to various chemo drugs. Then you could also seek 2nd oncology opinions on your chemo cocktails & endocrine therapy, noting the following information.
Resistance to Trastuzumab in HER2-Positive Mucinous Invasive Ductal Breast Carcinoma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48162...
"They do not respond to the typical chemotherapy to Her-2 positive breast cancer."
https://www.sciencedirect.com/science/article/pii/...
"HER2 positivity is associated with ... tamoxifen resistance."
https://journals.lww.com/md-journal/Fulltext/2020/...
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Hi CarGirl, good going! They screwed up my oncotype testing also, so please don't feel alone in your guessing & skepticism. Bless you in caring for your spouse's & family issues. May you all be blessed during this holiday season!
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Thank-you Rain88 and obsolete for your sweet remarks, we are all in this together! We feel one another's anxiety. fears and good news when it comes along. I pray for all of us going through these times, I hope your holidays are happy and blessed as well.
Susan
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Dingley, I hope you're doing the best possible with your treatment.
Obsolete, thank you and wishing you serene holidays.
And to you all a blessed holiday season.
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thanks ladies sorry for no reply for a while. I have been doing my research and having some dark days. I’m now on my first cycle of ac regime. I really like my oncologist. He has avoided all the chemo drugs that mucinous her 2 + seems to not like so I’m crossing fingers. Just have to now start process of fighting my consultant for a double mastectomy. I’m resolute in my decision so will go elsewhere if I need to.
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dingley...thanks for checking back in. Glad you like your oncologist and have a treatment plan that makes you comfortable. If those dark days become unbearable, I hope you will share that info with your team. They can provide other types of support as well. You might want to send a private message to feelthemagic. She also has been treated for HER 2 + mucinous cancer. Last time she checked in, she was doing well. She was diagnosed, I’d say, more than five years ago.
wanted to share my good news. I am coming up on 11 years since my diagnosis. Had my annual imaging last week and all is well. This past decade flew by...i have been so blessed. No doubt cancer can be very punishing on our bodies, but I don’t let it wear me down anymore. The only residual effect that I have been left with is that I am in a constant state of simmer. I started this journey premenpausal and chose ovarian suppression. I was hoping that my internal temperature would one day cool down to the point where I would once again feel comfortable in my own skin. But that never happened. So...out went much of my pre cancer wardrobe and now I layer my clothes and feel somewhat better. In the winter, people do look at me quite strangly because a light vest and scarf or a poncho or cape is good enough for me, while people around me are zipped up in their puffer coats and hats.... That said, I can’t complain. Life is really, really good0 -
Hi all my MC friends I keep reading the email updates and think of you all with the variety of experiences. Somehow my computer rarely lets me into the website to reply to any of you, its either getting too old or I am, maybe a combination of both. With Covid delays and strict lock downs In South Australia that means we currently have not had a Covid case fora few weeks and now have 1 active case just returned from overseas but they are in medihotel quarantine anyway. I have at last just had my 10 year Mammogram and all is totally clear, not that I was anticipating any different results, but it is always nice to know. Congrats Voraciousreader you will soon be rejoicing in 11 years clear of MC in the breast. Its my 20th year celebration next June of my Rectal Bowel Cancer Op that was also Mucinous Cancer but thankfully it was caught prior to it metasizing elsewhere. I don't know anyone who has had MC elsewhere so let me know if you know anyone. So I realise how blessed I have been to have done so well and continuing to be in relatively good health although the arthritis is starting to get worse. Have a blessed Christmas and New Year.0
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Hello ladies,
I am back with an update. I had a followup with the radiologist, a year post radiotherapy, and everything looks fine. He also confirmed that the findings from the bone scan are more likely begnin and will order another scan in a year from now. I was wondering if anyone else has been on 10 mg of Tamoxifen. I still get SEs on this dose, but not as severe as with 20 mg. My MO said that he was confident that 10mg is as effective in my case as a higher dose.
Dingley, I hope you are doing as well as possible. The dark thoughts, I am afraid, will acompany you for a while, but hopefully it will get better.
Voraciousreader, CONGRATULATIONS on your great news! "Constant state of simmer" - that's a good one! and the strange looks from people - I can picture the way they look at you, quite a sight!
Tricianne, CONGRATULATIONS on your good news as well! Your optimism is catching!
May the New Year be a good one and may us all keep well.
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rain
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Just catching up with all the latest then dashing off out to my continually busy life. Voraciousreader you will be coming up to your 10 year anniversary too soon Its good to see the progress. Rain I was mainly on Tamoxifen 20mg I started on 10mgm if my memory serves me right. but gradually coped with the SE.I think of you all as I hear the worrying US news each day. In SA we aren't doing too bad politically or Covid 19 wise and its a mild summer here so far and continuing to have few significant bushfires.so life feels good but we will get Lockdown the minute we have any health issues it seems to be keeping us safer and healthier.
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tricianne! Glad all is well! Keep cool. Keep well. Keep safe!
Btw...I am celebrating 11 years....but who's counting?
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11 year fantastic. Blessings on you0 -
11 year fantastic. Blessings on you Opps cant post in rapid submission0
