New diagnosis 2 years after first diagnosis
in early 2018, I had a bilateral mastectomy for high grade DCIS in my right breast and had 3 lymph nodes removed (all negative). I had DIEP flap reconstruction at the same time as the BXM. Both the surgical oncologist and the general oncologist said I didn’t need radiation or adjunctive therapies. I was monitored for recurrence with an MRI every 6 months. In May 2019 my MRI showed to foci in the same area as my original tumor. The oncologist, plastic surgeon and radiologist said it would be too difficult to biopsy and they would just watch it.
Fast forward to 2020, my husband lost his job and our health insurance. And because of covid my MRI was cancelled in May 2020. In August we moved to a new city where my husband got a new job. I found a new oncologist and she sent for an MRI immediately. It came back BIRADS 5 in the same place as the May 2019 MRI. A biopsy stereostatic was done last wee (was not hard to do).
My diagnosis is invasive micro-papillary cancer. This is my third primary cancer in less than 5 years (I had uterine cancer in 2016]. Now I have to wait to meet surgeons and am getting a petscan next week
Questions - since I have a flap, has anyone had one flap removed? I want to minimize difficulty of surgery recovery. Or is it beast to keep the flap. The tumor is behind my flap, on my chest wall.
The doctor said there are likely lymph nodes involved. I am 48 and feeling really scared that it is metastatic. I am afraid of doing chemo, the thought of poisoning myself seems wrong. Can anyone share their experience on doing chemotherapy, the good, bad and ugly.
I am angry that my Miami oncologist passed over doing a biopsy in 2019 stating it would be too difficult to do, even though it wasn’t hard at all.
Comments
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Mememee, I can't comment on your situation or offer any advice about what to do with regard to the flap, but just wanted to post to say that I'm so sorry that you are back with this recurrence (or new primary, whichever it might be).
I completely understand your fear that this might be metastatic, but hopefully it turns out that this cancer is localized and easily treatable.
Hopefully someone comes by who can offer advice. You can also do a search on the board as a whole or maybe within the Breast Reconstruction Forum using some key words such as "DIEP" and "recurrence" and that might turn up someone who may not see this post.
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Mememee:
I'm sorry you have been through so many difficult things these past few years. I do not know what type of chemotherapy, if any, is used to treat that specific type of cancer, however, while I initially had the same sentiments about poisoning myself with chemotherapy, I realized that my healthy cells were far more resilient to the chemotherapy than the cancer cells as the chemotherapy I had targets fast dividing cells and my cancerous cells divided faster than my healthy cells. Our bodies are not peaceful places. They are in a perpetual state of war from birth to death and so have evolved to take a bit of a beating. Your immune system is a war monger and has no qualms about going on a rampage, making you feel horrible and losing a few healthy cells to get rid of invaders and defectors. Chemotherapy is just a more cancer targeted version of this. My chemotherapy lasted about four months.
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Sorry you're going through this. I can't speak to the surgical side of things, but am also 48 and going through Chemo right now. I did 4 DD AC followed by 12 weekly Taxol - my 12th coming up this Monday. Chemo was much, much easier than I feared. I never experienced nausea and am just now getting to the feeling of significant fatigue. I understand not wanting to poison yourself. I choose to look at it as poisoning the cancer.
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Brittonkb, thank you for sharing your chemo experience. It really helps to know that the reality of chemo is its not easy, but not the worst thing. I am finding it very difficult since I moved and do not have a local support system. I will try to be more open minded and try to be comfortable with my fears. I like your perspective on thinking it killing the bad cells.
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WC3
It’s so comforting hearing from women who are fighters. I am not sure what chemo regime my oncologist has planned for me yet. It seems complicated how many different types there are. The one thing that I have on my side is I have no health issues besides getting cancer too often. I never get colds, flu, no high blood pressure etc. thanks for you positive perspective.
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I had just turned 51 when I had chemo the first time. It's really not that bad. If all you've seen are tv representations, they're overdramatic and over emphasize the side effects. There are many people on this board who worked full time or almost full time through treatment. I didn't - but I was in school for part of it & wrote final exams between surgery and chemo, then returned to school during radiation (after chemo finished). I was just fatigued and had to force myself to eat. You're young & otherwise healthy so that's positive. You can never tell how an individual will respond to chemo drugs but most do well & most of the side effects are well understood and proactively managed by the oncology team.
Depending on your chemo protocol, one thing to keep in mind is that you might not be able to drive there & back yourself. I had pre-meds which made me very drowsy so someone had to drive me home. I often drove there & my dh took the train to meet me there & drive me home. I was fatigued and not much into cooking so I liked having ready to eat meals or a good plan for food delivery.
I'm now on chemo since March & no end in sight. It's what's keeping me alive. There are bad days but tons of good days. & nope, I'm not a fighter. This is just medicine and we just keep showing up, one foot in front of the other.Ultimately we all decide upon our healthcare and can refuse treatment. I hope you get good news on your PET scan and a treatment plan that you feel comfortable with.
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Mememee, You've received some great feedback here! Just want to send support. The micro papillary type is indeed a sneaky one! You have been through a lot. I hope you have a good medical team your trust in your new area. The support part (lack of) really stinks though you have so many on breastcancer.org to offer info. and support much as you'd prefer not to have to deal with all this. I hope there are some others even if at some distance. All of this is important....
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Hi Mememee
My surgeon told me to hit it with everything as you will only get one good shot at it while it is early. You can see that I 've had multiple recurrences since 2002. It's not easy and thus this thread.
Not sure about your type of BC but some BC's respond best to chemo in the body but not breast area and thus radiation as well.
You are lucky you have the options of both right now becsuse you didn't get tx 1st time around.
I'd take the chemo. It might stop spread and save your life...or at least give you years more time....right?
It is doable...not easy...but usually not like movies where they are throwing up all the time. Cancer is poisoning your body right now so another poison will remedy it.
Yes it is still barbaric but it is all we have at this point in time.
Natural remedies won't fix this. We lost a good friend wjo was so sure she could fix it herself so forgive me for being earnest.
You have people who have dedicated their lives to helping and studying this in your onco's and surgeons. I'd trust them if you can.
Wishing you every good blessing and peace around your decision.
Astrid.🎄
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Astrid
It’s very helpful to hear from other women whom have gone through multiple diagnoses of breast cancer, and who have been through the range of treatments. Since my cancer is high grade and a mixed rare type, I am going to do the chemo and radiation. It’s so scary to have another diagnosis. But to live a few more years is worth it. Thanks for sharing your experience.
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wishing you every blessing with new round of treatments Mememee.
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Mememee,
I've done chemo and rads twice - 2005 and 2018. The first time I struggled with 'poisoning my body", the second time (I was then a parent) there was no way I wouldn't do chemo and rads despite having a BMX. I think we all question our recommended treatment(s) initially unless we have all the info we feel comfortable with moving forward. BC sucks no matter your DX or TX. It's all do-able depending on your outlook. Good luck!
J ~
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When you are first diagnosed in 2017 , did the surgeon got clear margins after mastectomy ?. Was the original size was 6 cms ?. Was there any chemo done and oncotype score ?.
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Hi PT1234
I was diagnosed in November 2017, margins were only 1mm so I had to go back for a second surgery to clear the margins. it was a bit over 6cm the tumor. No oncotype score was tested. Both the surgical oncologist and my medical oncologist said I didn’t need adjunctive therapy because I did the BxM. Plus I was already through menopause after having uterine cancer.
My new oncologist (I moved so have a new insurance & medical team) wants me to do chemo after surgery (which is next week!). She said I only have a 50% chance of surviving 5 years with surgery and it goes up to 60% if I get chemo and aromatase inhibitors. I struggle with the limited benefits of chemo given the side effects.
Mememe
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Mememee,
Have you been diagnosed with mets?
And has it been confirmed via biopsy that you have nodal involvement?
Because the statement "She said I only have a 50% chance of surviving 5 years with surgery and it goes up to 60% if I get chemo and aromatase inhibitors." makes absolutely no sense. The 5-year survival rate for regional cancers, i.e. cancers that have spread to the nodes but are not metastatic, is 86%. Of course every situation is different, and the fact that this is a local recurrence and an aggressive cancer could lower that figure, but 50% seems very low. Additionally, based on my understanding of the approx. benefit of chemo, if in fact you are starting at a 50% survival rate, chemo would generally be assumed to increase that to about 62% and the addition of an AI should take it to 70%-75%. Again, I realize that every situation is different, but the figures you've been told seem to be out of range.
Your previous diagnosis... could you clarify? You mentioned that you had DCIS, but your signature line states that you were Stage IB. Pure DCIS is always Stage 0, so did you also have some invasive cancer along with the DCIS? It's not unusual to have the two together and that would explain why you weren't Stage 0. And if this new cancer was in the same location (since you had a BMX, I assume you mean near the chest wall where you had the close margin), have your doctors confirmed if they believe this is a recurrence vs. a new primary. Because you mentioned that this is your "third primary cancer", but if it's in the same location, I would expect it's more likely to be a recurrence. That would impact treatment plans and prognosis.
Good luck with your surgery next week. What is the plan with regard to your DIEP reconstruction?
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hi Bessie,
in my biopsy it was confirmed that a node is involved. The tumor in the same location as my original one. In addition to IDC cells, there is micropappliary cells - recurrence plus some new cancer. Based on the MRI the tumor has started to penetrate my pec wall. Based on this my Onco says that it will /is infiltrating my vascular system as well lymph system. Her treatment plan is not about curing the cancer, but to slow spread. My insurance will not approve a PET scan at this time
My original cancer had a small amount invasive cells that were outside the ductal system hence it was stage 1 and not 0.
The new onco surgeon has a plastic surgeon joining for the surgery. The goal is to not harm the vascular connections of my flap since the tumor is very close to it. Both Dr feel reasonably confident that there will be minimal change in my flap since the tumor is behind it but some flap tissue will be removed to create a large clear margin. I am aware my flap could die from the procedure. Honestly I would rather an easier recovery even if it means a less positive esthetic.
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Mememee, thanks for the clarification on your original diagnosis. It sounds similar to mine... lots of DCIS with a small IDC. So the MX was necessitated by the DCIS but the staging and treatment was based on the IDC.
Very interesting that the new micropapillary cells have shown up mixed in with the recurrence. I wonder if that happened as part of the evolution of the cancer cells... recurrences can have a difference hormone status and HER2 status, so can the subtype evolve as well? It seems way too coincidental that a second different breast cancer would develop in the exact same location as the previous cancer. I don't know, just thinking aloud here.
I'm sorry that it appears that the tumor has infiltrated the chest wall. Now the info you got from your MO makes more sense, because that would be a T4 tumor, which would be Stage IIIB. I'm still surprised though that the benefit from chemo and AIs is as low as your MO said - but I'm admittedly way out of my depth once we are talking about advanced stage disease. You may want to head to the Stage III forum on this board, or perhaps do a search on the board for others with chest wall infiltration, to see what treatments they are doing and what they've been told.
Again, good luck with the surgery next week!
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I'm sorry you're dealing with this recurrence. I do not have a FLAP, but trust your surgeons on that one and get any extra opinions as needed since it is not a situation they see often. I have done chemo twice and tolerated it well both times. It's very individual. If you do end up doing chemo, PM me; I kept detained notes.
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Kbee,
I had my second opinion this week. Interesting the doctor said I have a new primary cancer and not a recurrence. Prognosis for new primary is better than the recurrence. Regardless I will still have chemo - CT 4 infusions with 3 weeks between each then rads. It sounds like CT is easier to tolerate than AC followed with taxol.I am glad I went for the second opinion. My local oncologist is going to follow the treatment plan determined by the doctor at Moffitt in Tampa. Next week I get my port and echocardiogram.
Mememe
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Meme, sorry about your new primary, but please know that you WILL do well. Tumors in the Papillary subtype family do NOT use the same pathways as conventional BC, so you are wise to advocate for yourself. IDC recurrence statistics would typically NOT apply to 90%+ of your new micropapillary tumor cells.
Your new primary invasive micropapillary tumor was > 90% of imicropapillary cells to be classified as such. Micropapillary tumors are typically not visible on MRI until they reach > 5mm in size. It's not uncommon to be admixed with some IDC cells.
One of your most important prognostic factors is your new micropapillary tumor's molecular phenotype. (Luminal A vs Luminal B, for example) so please ask your pathologist
Also it's very common for micropapillary to initially present with aggression, but recent micropapillary studies are quite favorable related to overall survival. Your one involved lymph node is favorable for micropapillary. Genome assays do not always correlate due to extreme rarity of micropapillary subtype & IDC % studies are not applicable to micropapillary.
It's totally different from conventional IDC using different pathways, so please don't let anyone spook you with conventional % risks.
Along the chest wall, future local recurrences can sometimes happen, but survival is in your favor!! So it's good you're doing the chemo & good luck on your flap Hugs and best wishes!
More info:
https://www.pathologyoutlines.com/topic/breastmali...
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Mememee -
I joined this board in 2017 but have not posted for a long time but my cancer experience has some similarities with yours. Some of the comments you are getting are not my experience. One confusion may be that you talk of "micro papillary" in some places and "papillary" in another. It might just be a typo but these two terms do not mean the same thing.
I have had BC twice. Once in 2000 when I was 55. This was DCIS in the right side which was treated only by surgery -- a lumpectomy. This cancer was micro papillary and was found by mammogram even though it was only 1 mm in size (not cm) and was too small to biopsy for hormone status.( It was Stage 0, Grade 2.) So I don't believe one poster's speculation that your cancer would not show up on an MRI as your lesion was larger than mine.
17 years later -- age 72 -- I had BC in the left side which was Stage 2A, Grade 2 with 1/3 lymph nodes positive. This was also micro papillary as well as ER+PR+ Her2-. I had a lumpectomy and AC/T DD chemo. At first I freaked out about the micro papillary part as no one had pointed that condition out to me in my first cancer and early studies suggested you die quickly with it. But after doing research I realized that medical opinion changed about it and it was no more unfavorable that regular IDC. One thing to keep in mind is that micro papillary cancer spreads quickly to the underarm lymph nodes but is not indicative of fast spread other wise. Stated differently if you don't have MP cancer and its in your lymph nodes, that suggests that it is spreading quickly and is poised to go beyond those underarm nodes. By contrast if you do have MP cancer, it doesn't really mean much as far as spreading goes.
Although some on this board think that if you are ER+PR+ you have a luminal cancer, this was not true for me. My Mammoprint showed that my cancer was Basal, which is what most Triple Negative Cancers are. This type of cancer is known as BLBC (Basal Like Breast Cancer) This is rare (1.5% of IDC?) but it meant that the letrozone I took for one year had been shown in studies to be ineffective even though I was hormone positive. In other words, something about BLBC renders AI meds ineffective. Very confusing, right? Anyway, I stopped taking the letrozol. I see the oncologist once a year but am not receiving any treatment now.
My oncologists and breast surgeon thought that having BLBC meant I had the same unfavorable prognosis as Triple Negative patients but a recent study suggests that this is not true and not only that but my prognosis is better than regular IDC. I can only hope.
I did not have a hard time with chemo even though I had the AC/T DD and was 72. I did read on this board about things to do to be proactive like rinsing my mouth all through the day to avoid sores, drank lots of water, etc. I never had nausea. Nurses said I breezed through it but maybe they said that to all the patients. I felt great the day of the infusion and the next day or two -- from the steroids I think.. After that I had a few days of feeling "off" but I walked my 2 dogs 3 times a day rain or shine every day except when I was at the clinic. I did not have my normal energy on those days but never had crushing fatigue as some do. It took me about 2 years to get back to normal energy and stamina. I never spent even one day in bed throughout the whole process. Loved my comfortable chair though and all the attention I got.from my husband.
The major issues I had were 1) extremely low white blood count (even though I took Neulasta) which meant I could not go anywhere but the clinic and could not have visitors and 2) after 2 dose dense infusions of Taxol, I switched to weekly infusions but quit after the 8th infusion because I was getting neuropathy in my hands and feet. I am glad I had the chemo because that was the only treatment that had a chance to help me. I feel like I did what I could and feel optimistic for the future.
I wish you well as you make your decisions and go though whatever treatment you choose. Polly
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Meme, if it's any consolation, 7 years later I am doing quite well, but I originally had Grade-3 (micropapillary architecture) DCIS dx, multi-centric & multi-focal, all of which was NOT seen on MRI, US & mammography.
Both radiology & breast surgery MD's at two different teaching hospitals stated that lesions belonging to the Papillary family are "frequently missed" on MRI if <5mm. And this was my actual experience, (not speculation per one poster's incorrect assumption). Micropapillary DCIS often presents in multiples, I had also been told by breast pathologists, but visibility varies due to microcalcifications, multiples, density, etc.
The 'Papillary Family" of lesions represents a "spectrum" of Papillary disease subtypes, of which Invasive MicroPapillary is only one subtype and is included under Papillary Family of Lesions This is why a previous poster is probably confused.
Grade-0 1mm is a micro size teeny tiny pre-cancer, NOT Invasive MicroPapillary Carcinoma. Depending on technology, years ago it was not uncommon to miss some small lesions in imaging.
It's also possible to have both Luminal A & Luminal B or other molecular phenotypes concurrenly in the mix of invasive BC.
DX of rarer BC subtypes is often very complicated, imperfect & controversial. You are not alone in your frustrations.
Best wishes to all.
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Obsolete -
If your statement that "Grade 0 1mm is a micro size teeny tiny pre-cancer, NOT Invasive MicroPapillary Carcinoma" is directed at my post preceding yours, I am not sure what point you are trying to make. No DCIS is "invasive" -- it is all Stage 0 -- but it does have a Grade larger than 0. I said my lesion was "Stage 0 Grade 2". In the past some oncologists argued that DCIS is a "pre-cancer" but I believe that currently the consensus is that DCIS is a carcinoma not a "pre-cancer". My DCIS was "years ago" but it was not missed in imaging but was found on a mammogram as I stated. I was making the point that if a mammogram (which was not 3D back then) could catch my 1 mm DCIS, then I would be surprised that an MRI would miss her larger lesions. If your comments were not related to my post, just ignore this post.
The point to me though is that Mememee had micropapillary cancer both times which is what I had also. Furthermore she has lymph node involvement which I have had also. I was simply trying to respond to her and give her some idea of my experience with that type of cancer and with chemo. .
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last week I went to Moffitt in Tampa for a second opinion at the advise of my local oncologist. The Moffitt oncologist said that it is not a recurrence, but a new primary cancer. My surgical pathology report showed the tumor to 100% invasive micro papillary cancer. He explained the this type of cancer likes to get into the lymphatic system. He and one of the surgeons are taking my case to their tumor board to have the entire department discuss the best way to treat this. It was a good experience. He spent two hours going over the details of the cancer and why it differs from my prior BC. He also said because I had a BxM in 2017, the fact it is in my pecmuscle doesn’t necessarily indicate it is a chest wall skeletal invasion. In two weeks I will have a clearer picture of what the path forward is and if the staging of my cancer may be different. He felt I had a good prognosis. Any good news is always nice to hear.
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so glad you had a positive experience with your specialist Mememee but sorry it is a 2nd cancer experience for you.
I hope the plan, once outlined for you will help with emotional steadiness.
Astrid.0 -
hi Astrid
happy to say I am as mentally ready as I can be. I start chemo on March 24. I am now having TC, then rads. I get my port next Tuesday. Chopping my hair off next week and bought a gorgeous European hair wig. Seeing how all the women here have gotten through chemo, then I can too. I appreciate all the support everyone brings. I keeps me from feeling like I am dealing with It on my own.
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the wig sounds fabulous
As does your attitude!
24th eh?
Well, we'll be here cheering you on.
Astrid.0 -
Astrid
I showed up for my first day of chemo, as brave as I could be. I had my port flushed and blood taken. Then they told me to see my oncologist. She said, “I have only had to do this 1 other time, but I can’t give you chemo”. The genetic test that the oncologist at Moffitt did showed chemo would be less than 1% effective as a treatment. Bad news, I can’t use chemo as treatment, good news, I don’t have to have chemo that won’t work. Thankfully I didn’t have radiation the first time I had BC. I start radiation on Friday for 6 weeks. There was a delay having to get my port t removed.
One day at a time, always looking forward and doing my best to be positive & grateful.
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oh wow Mememee!!
How amazing.
What a rollercoaster for you eh?
I hope the rads do a stellar job for you and not too much trouble from it. I found fresh aloe vera, put on straight after each blast worked briliantly. I kept it in the fridge at home or plucked it fresh from the garden outside treatment centre.
Thinking of you.
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Did you end up having chemo for your invasive micropapillary carcinoma?
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what chemo did they end up giving you for your micropapillary carcinoma. I have the same thing.
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