Hi everyone, I was diagnosed de novo ductal carcinoma ER/PR+ and HER2 - June 2021 with bone Mets spine and hip. I had a mastectomy and axillary clearance left side and then palbociclib, letrezole, monthly goserelin and denusamab.
I have just found out I have my first progression spine and possible lesion on my liver but more concerning a new primary lobular carcinoma in my right breast and armpit lymph. Absolutely devastated and wondering if this has happened to anyone else and what they did?
Two young kids, feeling pretty hopeless and sad about the future x
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RachH20
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So,so sorry you are having to go through this.Please don't despair.I had a double mastectomy in 2016 to try and eradicate the breast cancer I had then.Unfortunately Anastrozol did not stop my cancer progression into my liver and bones😏
I have been on a number of drugs since then and remained stable at times. There are many new drugs now and there is great hope for your future dear one.
I remember how it felt being first diagnosed but now almost seven years later I am still alive and feeling pretty good on my current med.
Stay as optimistic as you can,it does help to have a strong prayer life too.❤️
Thank you so much for reply, so good to hear you are 7 years down the line, it does help give a positive outlook and calm the fear down. I will keep pushing forward with one day at a time xx
First, I am sorry for you. To have cancer develop when your kids are young is indeed the pits! However, my being sorry and your being sad does nothing constructive. It is very important that you develop an optimistic outlook regarding your overcoming your disease. Your attitude must be that you will do whatever it takes to conquer it. You love your children, and they need you so you will triumph once you decide to stop thinking about negative outcomes. If you find you continue to obsess about what-ifs rather than taking constructive actions, please seek counselling.
It is good that your breast cancer is the most common kind as it is the most researched, and now has a very wide range of treatments. There are various forums such as this one where you can learn from the experience of others. Try to understand as much as you can about your disease, and your body's reactions to it. For example, the liver is a large organ that can tolerate more than one cancerous lesion. It should not be your main concern. In terms of medication, research indicates that ribociclib (Kisqali) has worked in some cases to arrest progression after palbociclib failed.
Breast cancer does seem to commonly progress to the spine, and can be contained there. Once it has appeared in one breast, it may not be surprising when it shows up in the other breast. Since you chose a mastectomy (rather than a lumpectomy) for your left breast, you may make a similar decison for your right breast. I hope you have a good surgeon as well as a good physician to give you the best treatment available in your area.
Hi, thanks for reply. Yes I’m definitely going to push for mastectomy and full axillary clearance although they are trying to say leave the lymph alone which I’m not at all comfortable with so I’ll push on that one.
That’s good to know about the ribociclib, I tried that first and it affected my liver but I know there is a third type of that medication so I’ll be asking about that on Tuesday definitely.
You are totally right about positive attitude. I have a really good therapist who does help me a lot with dealing with this so I will be catching up with her next week. In the meantime control the controllables and continue to look after myself and be kind to myself. Thanks again for your reply they all do help xx
Hi Again, I have extreme lymphedema in my right arm since my cancer exploded the lymph nodes there. I certainly would not be surgically removing any lymph nodes if I were you!! Please listen to your doctors on this. Our lymphatic system is not the source of our problems until it becomes infected.
I know but it’s already in 3 at least in the right side now and he’s saying there is no research to suggest it stops it spreading, if they were totally clear I would no way remove because it’s agony, luckily I’ve not suffered from lymphoedema in my left side but do have concerns for the right because it would be them gone too. Xx
I may not be understanding you correctly, but I don't know of any research that suggests removing lymph nodes stops the spreading of cancer. I haven't specifically checked on that possibility however...
Yeah I think because I have a brand new cancer in the right side which involves at least 3 of the lymph nodes my idea would be to do a mastectomy and lymph removal to try and stop that spreading more because I have ductal from left side and mets but the right side is lobular so a different type.
Agree. I was on Ibrance (palbocilib) for 2 years, worked well for me, then Verzenio (abemaciclib) for one year, not so good, and as of Tuesday, when PET/CT results came back, I was supposed to go on Kisqali (ribociclib). I had to have an EKG first, because it can cause QT prolongation. Turns out I already have that, so may have to do Xeloda. Too bad, as HazelGreen said, Kisqali is very promising.
Verzenio (abemaciclib) is the third that you may go on. That is the one that causes diarrhea, worse for some than others. My oncologist started at the max dose but I worked my way down to the lowest, 50 mg twice a day. Immodium helped a lot.
According to the American Cancer Society: Cancer in the lymph nodes.
"Cancer can appear in the lymph nodes in 2 ways: it can either start there or it can spread there from somewhere else. Cancer that starts in the lymph nodes is called lymphoma. You can read more about lymphoma in Hodgkin Lymphoma and Non-Hodgkin Lymphoma.Aug 25, 2023"
Right, but we were talking about breast cancer in the lymph nodes, not any other kind of cancer in the lymph nodes. I could quote more here on breast cancer in lymph nodes and spread, but let's stay positive.
As we both know, breast cancer starts in the breast, and, after metastasizing, moves to other areas, including lymph nodes. Clearly, removing the lymph nodes would not remove the breast cancer that had already spread anywhere else (skin, lungs, spleen, bones, etc.).
I have extreme lymphedema in my right arm because cancer exploded lymph nodes there. I certainly wouldn't chance having such lymphedema in other areas (such as my left arm or legs) by removing any of the many dozens of lymph nodes there, since there is no reason for me to think that they are cancerous.
I am concerned with making this message clear to RachH20 so I'll try again...I know of no research that suggests removal of non-cancerous lymph nodes helps stop the spread of cancer that originated elsewhere. It may only make sense to remove body parts with a high probability of developing cancer, such as the other breast in cases of breast cancer, or lymph nodes in cases of lymphoma. However, since removal of any parts is no guarantee, it makes more sense to keep all parts that are currently cancer-free and monitor closely the progress of one's cancer.
As my case illustrates, removal of body parts with a high probability of developing cancer isn't always necessary either. When I was diagnosed with breast cancer in 2006, I had a lumpectomy only. My surgeon very much wanted to do a mastectomy but I refused. He was so concerned that he did go back twice more to make sure the margins of his incision were clear for two inches. If my cancer had already metastasized, wherever it went, it stayed dormant for 13 years! It never appeared again in either breast. It finally was obvious when it attacked the lymph nodes in my right arm.
There is still so much not understood about cancer, I think we have to be very careful that we do as little harm as possible to the rest of our bodies while we treat the parts that manifest cancer.
But I don't think we were talking about removing lymph nodes prophylactically, Just a lymph node that is already cancerous. She wrote:
"a new primary lobular carcinoma in my right breast and armpit lymph..." So the question is whether removing a cancerous lymph node can diminish spread of cancer, after it has already metastasized.
I have read that lymph and blood are...highways for transporting cancer to other places. Obviously, that is not the only way breast cancer moves on to new territories.
Here is one example of what I found when I looked it up:
"Even if cancer has reached nearby lymph nodes, it doesn’t mean it has spread to other areas. But cancer that reaches the lymph system or bloodstream has a greater potential to travel to other parts of the body."
"Breast cancer that has spread to lymph nodes may be treated more aggressively than if it hadn’t reached these nodes."
There is also this: "In 2017, results of a large clinical trial Trusted Source showed that axillary lymph nodes (those under your arm) don’t always have to be removed, even when cancer cells are found in sentinel nodes (those closest to the breast). This applies to those with early stage breast cancer who have a lumpectomy." Note, early stage, and they are talking about when cancer was found in a sentinel node but NOT in an axillary node. Not the case here.
Or, more technically (from NIH): "Metastasis or tumor cell dissemination occurs via the hematogenous and lymphatic systems. For many carcinomas, the dissemination of tumor cells via lymphatic drainage of the tumor is the most common metastatic route."
Yes, we want to give the best commentary possible and do no harm. Certainly, removing many lymph nodes, as doctors are prone to do, is not a good idea. Removing a cancerous one might be. Her oncologist is the best one to help with this decision.
I certainly was not arguing against removing a cancerous lymph node! It is my understanding that, wherever possible, cancerous body parts (i.e, tumours) are removed. It is just not at all certain that removing a non-cancerous body part stops cancer from spreading.
I'm starting to wonder whether RachH20's oncologist believes that even the removal of cancerous lymph nodes is not a good idea. When I think about it, I've had no operations to remove any cancerous lymph nodes, or other cancers for that matter (such as those in my bones, scalp, spleen, etc.) except the original lumpectomy of my right breast.
Good question. When I was first diagnosed with mbc, it was pretty much lymph nodes, the main one mediastinal. Now for the first time since I started Rx 4.5 years ago, cancer in a mediastinal lymph node has returned, Never any talk of removing it. I thought it wasn't possible because of the location, but axillary cancerous nodes, as she has, usually are. It is just that if it is a sentinel node that is cancerous, non-cancerous axillary nodes are usually removed, too, but do not have to be. She has lobular in an axillary node, as I understand it. She said that her oncologist is leaning toward leaving that node, and she is not comfortable with that. I say out with it, while she is getting a mastectomy, but I am not an oncologist! So grain of salt.
hi Cindy. sorry to barge in but I feel the need. RachH20 has a 'cancerous' axillary lymph node in her right arm where the new primary cancer is located. that part is clear from reading her post. no debate...it is cancerous! in fact she went on to say that three lymph nodes were cancerous. the big question is whether it should be removed?? seriously? Of course it should be removed! the lymphatic system is the gateway for cancer spread to anywhere in the entire body (along with the blood vessel system).
my big question is why her oncologist is recommending to NOT remove it/them? I do not understand his reasoning at all. RachH20 stated that he said 'research has not shown that removal doesn't stop the spread'. how can he/they know that. if they are saying that patients who have the cancerous lymph node(s) removed still had spread, well perhaps the cancer had already spread beyond the cancerous lymph node prior to it's removal. there is no way to definitely know. so err on the side of caution.
no one is suggesting to remove non-cancerous body parts! just the lymph nodes that are cancerous. makes sense.
perhaps her oncologist is thinking that she already has mbc from the left breast and is on systemic treatment already. however, this NEW primary cancer is of a different type....lobular vs ductal, and I believe RachH20 is trying to minimize the chances of this new lobular cancer from spreading to distant sites(as TammyCross already mentioned). makes sense to me.
btw Cindy, I'm sorry you have such a severe case of lymphedema. very uncomfortable I am sure. I had 6 lymph nodes removed during the amputation of my right breast but did not develop lymphedema. the luck of the draw? why some and not others. there is still so much that is not known about this horrific disease. I did have the unfortunate collapse of my spine as the bone mets did damage to L1,L2,L3,L4 and L5....which is my entire lumbar spine. and now immobile, disfigured, and housebound, with limited support. we all have mbc, but our experiences are so individual. we each play the cards we are dealt.
my apologies to both you and Tammy for the intrusion. I've been following and wanted to add my two cents.
Thanks for barging in! That is what is baffling, that the onc would leave cancerous lymph nodes. He said that removing them doesn't stop spread . Yes, as many of us have experienced. But from everything I've read, cancerous lymph nodes do promote spread. That is what lymph does, right? Like blood. Circulating.
Thanks everyone, I had meeting with oncologist yesterday and I really did not feel like she could answer why they feel like they should not be removed, she said ‘research suggests’ I said well show me the research that suggests because I’ve not seen any. I am meeting surgeon on Friday and will now be pushing him to do full mastectomy and to operate on the lymph’s too, annoyingly he did my surgery left side two years ago and I asked for a double mastectomy then but ‘research’ didn’t advocate for removing a healthy breast and now I’m here with a brand new different type of cancer, so depressing.
And yes I was wondering if I was being clear, it’s the concern of the lobular spreading now in addition to the original ductal metastasis because she said if it’s different receptors it will be hard to treat both together and she’s already said the next treatment on offer which is eribulin and everolimus has a low chance of working when first line has been ibrance and letrezole (funding in the UK NHS) which makes me feel like removing the lymph nodes in the new primary is even more important.
Really appreciate everyone’s input on this question, it’s so good to just have advice from others. X
That is so frustrating, that you called it correctly when you wanted a double mastectomy and they didn't do it. Really difficult when we seem to know more than our doctors!
I agree with Ph17: Second opinion. Really time for that. They can't show you the research, and the research that pops up if you Google it says remove those lymph nodes. Especially if it is lobular. I always wondered if lobular can turn up after ductal. Too bad the answer is yes.
Don't know where you are, but Dana Farber in Boston can be great and does virtual, MSK and Mt. Sinai in NYC, and MD Anderson in Texas are the tops. Mayo in the Midwest. There are other good ones but they are in the top five for breast cancer.
Oh what news you have to deal with and with a young family to look after too. I wonder though if the light iin your story is that whatever treatment you have will knock back both primaries and any metastases and give you many more years.
I'm not in the same situation as you. I was stage iv de novo early 2019. However, after several relapses, mainly brain, I'm still here and thriving due to the excellent up to date treatments.
What I'm trying to say is, you're understandably taken aback by this news but hopefully you'll move into 'ok so what can be done' thinking next (if you haven't already).
My heart is with you on your next part of your cancer journey.
Thank you, always good to hear of good news with medication progressions. It’s always a dark place when things go wrong but trying to push and advocate for myself to make sure I get surgery, scared that this one will metastasise and I’ll have 2 types to contend with. Thanks for replying xx
I am so very sorry you are going through this, especially with a young family. I am praying that your doctors find a good treatment protocol for you that will clear these new areas of concern and give you hope. This forum is a great place for support and advice. Sending you hugs and prayers.
It is an unexpected blow to develop another primary, but as Hazelgreen says that can happen. My primary in 2005 was on the left side and there were only what the doctors thought were benign changes on the right, but I decided to go for a double mastectomy and as it turned out, there was actually pre-cancer in the right breast. Fast forward to 2017 and I was diagnosed with secondaries. Back then Palbociclib (Ibrance) was the new wonder drug on the block and I was lucky to get 4 years from it, but now I read that there are newer and better versions of it. I have the PIK3 mutation so my next line of treatment will be Piqray which only reached the UK late last year. So take heart, new and increasingly effective drugs are coming through all the time. Enjoy your life now but also feel hopeful about the future.
I know you’re feeling devastated but there is hope! I was diagnosed in 2015 with two tumors to right breast. One lobular and one ductal. My oncologist was a 40 year veteran and gave me Anastrozole and Fulvestrant as first line treatment. I got 6 1/2 years out of those. So grateful! The lobular then went to my stomach lining (it favors the digestive tract, so keep an eye out for excessive vomiting etc.) Then I was on Ibrance and Tamoxifen for 2 years. Due to small progression on the spine, I’m now on Verzenio and Letrozole. At my diagnosis, my entire skeleton was covered in mets. My biggest side effect has always been fatigue, so be kind and rest when you need to. Difficult with small ones, but they need quiet time too! There is great hope for you. Trust your doctor, but self advocate too. Get second opinion if you need it. Best of luck to you and stay with this forum, you will learn a lot.
Hi Nocillo, that’s so interesting to read your story and if your success in thriving . I had what seemed like a virus last week but the symptoms didn’t all match properly for a typical virus that effected my digestive system. That was a question my GP brought up, if there might be something going on with my digestive tract. Do you recall your very first symptoms when the cancer spread to your stomach? I only have ductal cancer that I know of but Ive had lots of new and not-usual-for-me symptoms happening over the last few months, and they keep changing!
My first symptoms were just not wanting to eat as much and I lost 17 pounds without even trying. I thought it was a miracle!!🤣🤣 3 months later I was vomiting every time I ate. Lost a pound a day and was so weak I couldn’t get out of bed. Turns out I was losing blood in my stool without knowing it due to the many tumors and had to have 2 blood transfusions. Once they finally did an endoscopy and started new meds, I felt great pretty fast. It’s hard to know new symptoms when every little new pain twinge can make us so nervous! Make them do whatever test you feel you need to prove what’s really going on. My oncologist never did anything, it was my family doctor who finally ordered the endoscopy thinking I had an ulcer, ha! I was pretty angry at my oncologist. We’ve moved and I have a new one now. Good luck!
I was diagnosed five years ago with lesion to spine 3mm and right lymph node, opposite to my breast cancer.
I was on Ibrance and letrozole for almost five years(until last week) with progression in my lymph node. I had an operation to take out the node and continued 2 more years on Ibrance. I year later had another node. Had it removed and continued for another 3 years on Ibrance.
I would definitely get a second opinion on the node.
Like everyone has been saying lots and lots of meds!
There are many on the same rolercoaster, 155k+ in the US alone.
My dear partner has just progressed after a complete metabolic response 2 years ago on Arimadex, Ibrance. This was the first line treatment in Australia with Ibrance being funded by Medicare but no further after progression. Tamoxifen or Cap suggested by Onco but a biopsy this week will inform any change in receptor profiles, ER+ etc.
We are also having genomic testing at our expense. Although not in the standard of care ( esmo.org) a 2019 guideline from the American Society of Breast Surgeons recommends that all breast cancer patients be offered genetic testing. (Healthline) Talk to your doctor about whether you should get tested.
Have researched to the max, books, articles etc.
The insiders guide to Metatastic Breast Cancer, Anne Loeser.
The takeaway is a positive but pro active approach ie integrative, complementary treatment will produce superior results.
In the US I like Dr Donald Abrams, Integrative Oncologist, supports organic, against sugar, dairy.
Some talk of restrictive diets but a little dark chocolate, the rare but a occasional red wine can’t do any harm.
A holistic approach, diet and regular exercise , mindfulness gives the best chance of success.
The documentary on blue zones in the world, concentration of centenarians is revealing on lifestyles etc.
RachH20,I have had a similar but not the same issue. I was first diagnosed with BC in 2012. It was hormone positive. I had a lumpectomy and radiation, as keeping as much of the your "healthy tissue" was suggested and the difference between that and a mastectomy was reported as less than 5% at that time. Unfortunately, my cancer came back in my spine and hip, with pain appearing around Sept. 2014. As I was not educated about the return, especially in the bone and my tumor markers did not indicate a tumor, the mass crushed part of my spine and caused a great deal of damage. The MBC was not officially diagnosed until I went in for surgery in Jan. 2016. For that entire time the tumor grew, ad well as the pain and I couldn't get answers. After that was on a steady treatment protocol, in 2019, I had a lump, that I previously identified in my other breast, grow larger and become mildly painful. I asked for a mammogram and lucky me (that is sarcasm) I had a new breast cancer. While it was early stage, it was HER-2 breast cancer. So I had to quit Ibrance/letrozole/Xgeva because chemo was the treatment for that BC. I then had chemo for 12 months with herceptin and perjeta. After 4 months I was able to go back on the Ibrance, etc. I then had another lumpectomy to make sure all tumor tissue was removed along with radiation. No mastectomy for me since I had so much radiation (77 in total after all 3 treatments) and the surgeon said the skin was too thin and would die. So another lumpectomy. It's been 4 years now. My hormone positive MBC has strangely not progressed at all in 7.5 years. I have been on Ibrance 7 of those years and am continuing still. No sign of the stage 2 Her-2 positive returning. I have to say I will flip out if that becomes metastic, too but for now I am good. My children were young while much of this has gone on. One graduated high school in 2022 and the second in 2023. I did read that 13% of woman with MBC live loner than 5 years and I am truly lucky to be part of that group. So I am thankful and try to be because that is a hard thing to do in these situations. I do have days of depression and days of feeling sorry for myself but fortunately I only ruminate for 3 days and move on. I did have my sentinel nodes removed from each side to be autopsied. They did not have cancer and I did not have any swelling in my arms. I gave you a great deal of info in hoping that something in here can provide knowledge or hope for you. This is a tough place to be for all of us and we usually try to pull everyone up as high as we can since we know the possibility of fear causing lows. Contact me anytime you want a shoulder to cry on or some words of encouragement. or just a lift of your thinking.
Andrea
- Titanium Turtle ( I have titanium in my spine and all that spinal damage has made me walk slow like a turtle)
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Ibrance plus letrozole working
Lobular carcinoma
