I’m 56 and I’ve recently been dx’d with lobular ER+ breast cancer (2cm), go back to see consultant on Monday for MRI results. I have a lumpectomy & sentinel lymph node removal scheduled for the 28th March. Drs Initial plan was for removal, tamoxifen & chemo….but that may have changed since MRI
Undecided if I should just go for mastectomy though and I’ve read that tamoxifen is better for pre-menopausal women.
Would welcome any advice or tips on navigating this journey.
Hi - if it were me - I wouldn't jump the gun to use an expression, wait to see what results of MRI are , make sure of your options mastectomy is radical and drastic surgery IMHO , I had wonderful breast care nurse at the hospital and spoke with her or the team many times, there also was a Macmillan centre within the grounds of hospital I had radiotherapy at, so supportive, I was put on Letrozole ( I am in my 70's) initially but afte 5 weeks changed to Tamoxifen, I was just soaking wet from head to toe, the hot flushes were diabolical with Tamoxifen but everyone is different, there are other medications I have leant since but only know of the 2 you mentioned and my my experience with both. It is and can be a rotten journey you will be embarking on but there is plenty of help out there possibly more than in 2017 when I did it. Wishing you good luck -hugs Diane
the questions to ask and understand is that Er+ cancer and return even a decade of more later… I was diagnosed at 44 and MBC at 60… this is a very common story. Then because you and I are both lobular, you should ask questions about this as few studies are done because only 10% of so of us have lobular cancer which forms invlobules vs most people who have ductal cancer which starts in RN ducts. Trials are done containing both lobular and ductal pts but it is hard to draw conclusions when 10% of participants are lobular. The thing to remember about lobular is that it is always harder to diagnose for that reason it is considered “sneaky”. So what that means is that when you scan it doesn’t show up as easily as ducts cancer often making primary cancers later stage than ductal and MBC treatment more difficult. In my case, I had a mammogram 8 m prior to lobular ER* Her 2 Neg dx…, but I had a clear mamo, 8 m prior. The mammogram could not see the 2 cm Stage 2 cancer until I could feel it. They said at this size it had been growing for perhaps 8 years. This invisibility cloak features in MBC too… I had a car accident a year ago. The ER took CT films and saw spread to my liver, this was debated for a year by my oncology team… thinking that I did not. Finally I had an abdominal CT scan which showed again liver, and all over my abdominal cavity. They said the cancer looked like plastic wrap and had been hard to see all of the previous 4 CT scans through out last year. I am telling you my specific story because I am not unique, this is the story most of us lobular patients have and so the aggressive choices you make now can help you get piece of mind that you have done all you could do. And then ask for the maximal surveillance program.. and what fhat might look like. They have blood draws with circulating tumor cells that Can give you a big heads up. You doctor will be knowledgeable. And I bet the survivors clinic at Dana Farber or other big cancer center would look after you well. Not everyone recurs but if you stay vigilant than you can just go back to you life after treatment knowing you are doing as much as you can. Good luck and I hope this was helpful and not too scary.
I’m so sorry for the fee typos making it hard to read- never write without my eye glssses!
The questions to ask and try to understand more about is that Er+ cancer CAN return even a decade OR more later… I was diagnosed at 44 and MBC at 60… this is a very common story. Then because you and I are both lobular, you should ask questions about this effect us as few studies are done specially with lobular populations because we make up only 10% or so of “all comers” in a Breast cancer trial most of whom will have the more common ductal Breast cancer which forms in the breast ducts. Trials are done containing both lobular and ductal pts but it is hard to draw conclusions for us when only 10% of participants are lobular. The thing to remember about lobular is that it is harder to diagnose( hard to see on scans) and for that reason it is considered “sneaky”. So what that means is that when you scan it doesn’t show up as easily as ductal cancer. This often makes primary cancers be later stage at presentation than ductal ca and MBC treatment more difficult.
In my own case, I had a clear mammogram 8 m prior to lobular ER* Her 2 Neg dx…, The mammogram could not see the 2 cm Stage 2 cancer until I could feel it. And then had a diagnostic ultrasound. They said at this size it had been growing for perhaps 8 years. This invisibility cloak features in MBC too… I had a car accident a year ago. The ER took CT films and thought they saw spread to my liver, this was debated for a year by my oncology team… thinking that I did not. Finally I had an abdominal CT scan which showed again spread to liver, and all over my abdominal cavity. They said the cancer looked like plastic wrap and had been hard to see all of the previous 4 CT scans through out last year. When they declared I had stable disease…. Yet in fact cancer was marching on. No one’s fault, just that is what happened when diagnosing difficult to see cancers.
I am telling you my specific story because I am not unique, this is the story most of us lobular patients have and so the aggressive choices you make now can help you get piece of mind that you have done all you could do. And then ask for the maximal surveillance program.. and what fhat might look like nowadays. They have new blood draws with circulating tumor cells that Can give you a big heads up. Even years before. Your doctor will be knowledgeable. And I bet the survivors clinic at Dana Farber or other big cancer center would look after you well. Not everyone recurs but if you stay vigilant then you can just go back to your life after treatment knowing you are doing as much as you can. Good luck and I hope this was helpful and not too scary.
Thank you for your detailed reply, not too scary. My dr has already said it’s sneaky, my mammogram looked like a cyst but he said it didn’t feel like it. My US was clear, so had dx via biopsy under mammogram conditions. MRI was last week. I’ve already read that MBC is relatively high in LBC. I would prefer to know these things up front so I know what I’m dealing with and what to watch for
you are being very brave and smart to go into this armed with knowledge. Let me know if I can help answer any questions.
Thank you, I might take you up on that. I like to think armed is forewarned and although I might stick my head in the sand at times, I can’t with this beast. I would rather know and deal with it as best as I can. Until they tell me there is nothing more they can do, then life goes on with a few more bumps/ hurdles in the road. I’m sure I’ll have many low points, but I’m not there yet. Thanks again x
hi ladies- I am so sorry but I wrote the post below hastily when I woke up and without my glasses- and posted… I don’t know how to edit! So I more carefully fixed it up and reposted below it. So sorry!
🤣 I’m the same without my reading glasses
Thank you for replying, I’m definitely not jumping the gun so to speak. I’ve really not thought of much else since dx. I think I was hoping the decision wasn’t mine to make tbh, but it is and I have to decide one way or the other. I just wanted different perspectives to also think about not just what is going round my head atm. Thank you again x
Hi Mistydeb01, I'm 45 and I was diagnosed in 2021 with lobular ER+, PR+ and I opted the mastectomy because the only option offered to me due to my age was tamoxifen and I couldn't tolerate the side effects. I believe if you are older there are other medications available that may enable you to avoid a mastectomy. They told me if I didn't take the tamoxifen I would get cancer somewhere else. The mastectomy in these more current times is not bad at all. It is a matter of how you feel about your breasts and if you are willing to do anything else to keep them. I wouldn't be afraid of a mastectomy because my experience was quite good. Best of luck to you in making your decision. God Bless!
Thank you for your response. Tbh, I’m not bothered about the boobs. My main concern is the recurrence of the bloody cancer down the road. But I’ve learned that mastectomy doesn’t even completely eliminate that.
Hi mistydeb, I also chose to have a double mastectomy for the same reason you spoke of and had MBC spread to my bones 16 years later.. but with lobular they told me that there is greater risk of the other breast being involved and sure enough when they did some pathology at the time of the double… my other boob had hyperplasia which means some changes in the cells in their way to becoming neoplastic cancer. So I was glad that I did have the double. Still it is a big decision with a lot of down time for recovery so there is that to be considered. A lot to think about and you won’t be wrong which ever way you decide to go.
Thank you for replying, yes it is a big decision and one only I can make - after all I’ve got to live with that. I wish the decision was taken away from me at times though. I’ll see what the consultant & cancer nurse says tomorrow. Then I’ll have a few days to mull it over again. Thanks again, all the best x
in the old days the Oncologist “advised” and his word was usually followed. But now it is more collaborative.I agree this makes it harder than the old days but it is you body.
Unfortunately, there is not much we can do about that. I had a hysterectomy 3 months ago to try to eliminate further the risk but I still live in fear of having a possible reoccurrence somewhere. I think you already have all of your answers but sometimes it's so hard to face the truth and you wonder why you have to go through all of this. I'm so sorry you need to be faced with this decision. Hopefully, your doctors will be able to tell you more.
Hi, I’ve read your message & I’d like to let you know my story & what I’ve done. I had a lump 1.8cm. My surgeon recommended a lumpectomy. I am 64 now. When I was in my 30s I had two benign lumps removed separately from the same breast but each on the right side. I questioned if that mattered. Doc said not due to being in a different area. I did consider a mastectomy also especially due to 3 lumps now. However I decided that instead I would change my own habits. All decaf coffee now & less daily, more water, less processed foods, more exercise. So I went with the lumpectomy. Then turned out I needed chemo ( the genetic test taken after the lumpectomy said the likelihood of another lump was high), but only 4 sessions. Tough & I was in close contact with my nurses but I got past that. Then radiation x 5 treatment, Letrizole (newer version of tamoxifen) & now recovery. It’s taken me a year at this point. Looking back I don’t regret choosing a lumpectomy. I hope for you that you can come to a decision that you will be comfortable with for your treatments. I wish you all the best.
Thank you for replying. I only have 1 coffee a day and drink tea mainly during the day until about 4pm, then it’s cordial (hate water on its own). My diet is quite clean as I’m gluten free and react to a lot of lectins in the last few years so I’m careful what I eat. It probably could be better, so it’s something to think about. Thank you & all the best
I am so sorry to hear of your diagnosis. As many have stated here lobular is a different beast. Curious if you had or will have an Oncotype test to determain if Chemo will be effective for you? My wife's indicated that it would be useless (but did do chemo after the surgical pathology report came back "to cover all basis"). From my reading tamoxifen is not that effective against lobular due to the make up of lobular. It was stated in a different thread -
"the problem with Tamoxifen is in the loss of E-Cadherin propagated by the genetic mutation in the CDN1 gene that almost always is carried in lobular carcinoma. It causes a fault in the cell's use of E-Cadherin which in turn causes the loss of "tumor" formation but rather creates stranded formations of cancer and also it creates a "slippery" surface at the cancer cell's receptor site, allowing Tamoxifen slip off and not attach to the cancer cell, therefore letting the cancer cells to keep feeding, growing and spreading."
Please feel free to read through this forum - healthunlocked.com/share-me... - There is some discussion of lobular, treating with tamoxifen, and how it can be surprisingly sneaky.
Please keep in mind again that many have stated lobular likes to hide. On my wife (dx'd at 57) the scans and MRIs were way off from the pathology report from the surgery of her double mastectomy.
This article from MD Anderson (a top cancer institution in the US) states -
Because detection is challenging and patients don’t see changes in their breast, 60% to 70% of patients’ diagnoses are changed to a higher stage after surgery.
This happened to my wife and we were not prepared since all the previous scans indicated treatment was working but the pathology report showed something totally different.
Link to MD Anderson article
mdanderson.org/cancerwise/W...
Please keep in mind this board is here to help with information, support and questions, not to scare or intimidate you in anyway. I know I wish I would have read far more in the early stages instead of taking the Onc's word on everything. Bottom line when it comes to cancer nothing is predictable.
Thank you for your reply, not too much scares me tbh…it is what it is, just gotta deal with it. I also like to be prepared. I will look at the links you sent me, thanks.
Double checked the tamoxifen at the appt yesterday and they said it will be AI and not tamoxifen because of my age (not the cancer type), I’d already read somewhere about tamoxifen. We’ll see if that changes after removal & pathology report.
Sending 🤗 to you and your wife, hope all goes well with her treatment
I had similar to you and had a lumpectomy with total clearance of my left nodes. I did not or chose not to have reconstruction on my breast and although it is smaller than the other breast it is not noticeable. I then went on to have 5 years of tamoxifen and 5 years of letrozole after having Chemo and radiotherapy. The side effects to the hormone tablets was gaining weight mainly but if I had been told how good slimming world is I probably could have avoided the weight gain. I have been clear now for 12 years so the lumpectomy was successful, I also had to have margin clearance a month after the lumpectomy as well. All the best in your treatment and take care.
Thank you for your reply, that is reassuring. I go in today for my wire & mag trace and then op tomorrow 🤞all goes well.
Thank you all the best for tomorrow will be thinking of you and take care. My tumour was a grade 3 and they said it was showing up as a 9 which meant it was the most aggressive. However I am still here 12 years later and just had a clear mammogram so I am sure you will beat this.
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