Diagnosed and scared

MTwoman

Kicks, oh for f*** sake. NO ONE here can include every single iteration of every type of bc and/or every type of treatment in each and every post. If that were the case, each thread would become too long and cumbersome to be useful. And, again, what you stated "NO ONE k ones what tomorrow will bring" is in agreement with what I did "but it can return. We do whatever we can to prevent it, but it's possible."

Lula73

kicks- I don't think MTwoman was trying to minimize what we go through. She just laid it out like a dr would-very clinically. And she points out that all of it is in hopes of keeping it from coming back. So again not minimizing. We are all different-some of us are able to compartmentalize while others of us feel like we're drowning in it. Both of them are ways we each cope with things and are able to process them. I think all we're seeing here is that MTwoman is a compartmentalizer (being a fellow compartmentalizer, I totally get it.)

Tara17

elfmcg --hope you are doing well. Herceptin is a game changer in her2 positive disease and many ladies here have mentioned perjeta as well for node positive disease. I spent so much time on the ER -PR-her2 positive board here when i was first diagnosed --so many ladies at different stages doing well, living their lives and encouraging other ladies. So node positive disease does not at all mean dire things and node positive women certainly can attain NED status! -that said, our emotional reaction is our emotional reaction --so i can just tell you that spending time on the board i have mentioned helped me greatly emotionally. There is really something in the power of the stories of those who are doing well .

Kicks

MTwoman - OH MY! Your choice of words is surprising and unexpected.

It would be less than logical to infer that every Thread have every possibility of the miriad of potential BC DXs and TXs. I never did infer that. HOWEVER, BC IS very complex and it does need to be remembered that there are quite different TX protocohols and prognosis for the different types and variations within each of those types along with any other issues that are present at DX.

It DOES need to be remembered that there is NO "One Size Fits All" when it comes to BC.

"NO ONE KNOWS what tomorrow will bring! (bad typing in previous post - " NO ONE K ones what tomorrow will bring"). Yes - it is possible for a 'return' of a cancer (or mets) or developing a totally different cancer - but more than just that (and the point) - there is no way to know what might/will happen (a heart attack, a car wreck, being hit by space debris, slipping in bath tub/shower, etc.).

letsgogolf

cure definition

1. a means of healing or restoring to health; remedy.

2 .a method or course of remedial treatment, as for disease.

3. successful remedial treatment; restoration to health.

I must say that I don't understand the debate about the word "cure". I know many people who have been cured of breast cancer. Yes, it does sometimes come back. Most people eventually die of something else. Both my surgeon and my oncologist have used the term with me. I was told that I was cured by the surgery and that the radiation and arimidex were/are used to decrease the chance that anything else will develop.

I think we all understand that there are no guarantees but I think it is misleading to suggest that once we have breast cancer we all have breast cancer cells lurking in our bodies for the rest of our lives. I recently saw another post saying that we either die with cancer or from it. Where do these ideas come from?

MinusTwo

Golf - Many of us have had a recurrence. Many have had more than one. Many women are living with Stage IV cancer. Most of us can NOT go with the word 'cured'. There is no known cure for breast cancer.

I was aware of the facts after my first go-round. Still, I was "cured" so it didn't apply to me. (tra la tra la) I was blindsided after clear nodes & clean margins - that I had a recurrence in 2 years. And with a much more aggressive diagnosis. I have friends 15 & 20 & 25 years out who still speak of NED. They never say they were cured. They are vigilant about getting the recommended tests & scans. Not obsessive - just vigilant.

Of course we all get on with our lives and hopefully don't sit around waiting for the other shoe to fall. I am getting back to my new normal for the second time, but it's not as easy. Life can be really good again. But it is important to be aware that yes, it can come back at any time so you can be proactive.

MinusTwo

Oh yes, and the quote I've heard it that you won't know that you're cured of breast cancer until you die of something else.

letsgogolf

It is scary. I have a good friend who just passed the 6 year mark after stage 3 breast cancer. Everything was going great until last week when she discovered she now has a stage 1 (1cm.) triple negative breast cancer. Not sure if this is a new cancer or recurrence because the receptors are different. Tumor in the same breast 6 years ago was much larger and hormone positive. Strange disease.

I have 2 other friends who have passed the 30 year mark without a recurrence. Many other friends are more than 10 years disease free.

kira1234

Letsgogulf it sounds like a new cancer. I was 7 years out but mine is in the same breast and has the same receptors and is considered a recurrence.

Cancer truly is a strange disease. The funny thing is my oncologist has basically just continued the original plan just with an AL rather than tamoxifen

MTwoman

Kicks,

surprising? perhaps. unexpected? hm. well, after reading 2 separate times on 2 different threads that my responses were not comprehensive enough or didn't match your experience, I got exasperated. I typically don't like to respond that way, you're right. I do not intend to speak for everyone or even anyone else. I don't need to "educate myself" on the various other types of bc or their treatments in order to make more comprehensive posts about various protocols etc. There are so many women here who can speak about them much more knowledgeably than I. My response was taken (by you) completely differently than intended. It was not meant to be all inclusive. It was meant to be taken as there are treatments that we go through (like a, b or c) to attempt to rid ourselves of bc, to fight it as best we can, not a list of the only treatment options. We were discussing the word "cured" and posters reaction to it.

I come here to share some small piece of what I've learned with other women, as I find that sometimes it helps them and sometimes it helps me. After 14 years NED, many things have changed, and I find that I learn new things here all the time. I will be sure to watch my pronouns, and add "in my experience" to my responses to try and avoid future kerfuffles.

kira1234

Elfmcg I hope you're still around. Hoping some of your questions have been answered by your doctors by this time. Being hcr+ it will decide choices your going to be making along with being er/pr-. Please let us know what your oncologist suggests when you know.

letsgogolf

kira1234 I see that you cancer was grade 1 as was mine. Mine was IDC with Lobular features. My oncologist said that because my Oncotype score was only 3, with radiation added my risk of recurrence was between 1 and 2%. Sounds good but I am not quite that optimistic. In fact, she told me 3% 2 months ago. Not sure why my stats improved. More than likely she forgot what she told me.

If yours returned and others with stage 1, grade 1 also had recurrence I know I am not exempt. I actually worry more about my other breast because I am higher risk due to density issues.

kira1234

Letsgogolf you're correct I'm stage 1 low grade with both diagnosis. My breast surgeon is very sure mine returned because I was recommended to have internal radiation. At the time allowed for lobular breast cancer no longer allowed. Some stray cells escaped the radiation treatments and have been growing over the last 7 years. I will also add I was 24 on the oncotype test most likely because I'm pr-.

ParisParis

I would also like to add my two cents to the "cure" discussion going on a bit earlier on this board.

Of course breast cancer is curable. The numbers peddled differ a bit, but around 70 - 80% of women will be cured, meaning they will not move on to stage 4 and die of this breast cancer (They could have a new primary, of course). The problem is that we have no way of saying with any certainty who the lucky ones will be. So the problem is not that there is no cure but that we lack the necessary knowledge and technology to be able to tell anyone with certainty that they are cured. Obviously that is a very unsettling state of affairs. My surgeon told me that I had excellent chances of being cured, but he did not state that I was cured, and I liked the way he put it.

MinusTwo

This has become an endless philosophical & semantic debate. Those of us who have been around for years have seen a lot of recurrences and even had some ourselves. The point is.....

What happened to poor Elf - who just asked a simple question.

Elf - did you have your lumpectomy & SNB? How did it go?

Elfmcg

elf is still here thanks haha...

I had lumpectomy and an snb yesterday, sore today and I'm exhausted. I think they took two or three nodes, I won't know anymore until the 14th of July when I get my results. I'm really scared!!

kira1234

Elf, Oh so glad you're still here. The waiting is the hardest. Did your surgeon give any idea about the nodes?

Elfmcg

I didn't actually get to speak to the surgeon, just the breast care nurse, and I asked her and she said they wouldn't be able to tell until pathology she's said unless they were full of cancer and there was nothing like that in my notes

MinusTwo

Oh Elf - that's a LONG wait. Are you at a major medical center or do they have to send everything a long way for testing? Maybe the holiday is causing part of the timing? I'd give the surgeon's office a call after next week just to check - like by the 7th. Have they set up a post surgical follow up appointment for you? I expect they will have the results before then even if they don't want to share.

Hopefully they reminded you that you shouldn't be lifting bags of puppy chow (or even gallon milk bottles at first), nor should you be painting rooms just yet. Ice packs are OK but on top of a towel and not for more than 10 minutes at a time.

Also hopefully you get a couple of days off from work to recoup. Or maybe working helps keep your mind from racing? Anyway, we know it's really hard to wait. Find things to occupy your mind, like binge watching a series that you didn't have time to watch last year, or walking. When they let you in the water, you can do gentle, mindless walking in a pool.

kira1234

I'm so sorry you're having to wait. My breast surgeon immediately told us in the hospital my nodes looked clean. Official diagnosis was 1 week later.

Elfmcg

hi, yes I'm in Ireland, so it all goes out for testing which takes over a week, and then the whole breast tumour board discuss the best treatment plan for the specific results, they meet once a week.

Thanks for the other info, I did meet with the physio and breast care nurse afterwards so I've been taking it easy and doing my excercises.

Elfmcg

Hi everyone,

I guess I'm just looking for some support or to feel like how I'm feeling is normal during this stage.

I had a lumpectomy and snb on the 26th of June, and will be getting the results on Friday.

During this time, I have been plagued with anxiety and feelings of doom with the thoughts of the results and what they will be. I worry about the blood tests, that some other disease will show up, I'm not sleeping well, I've developed all kinds of aches and pains, from whooshing sound in my ear during the night, noticing floaters in my eyes more, feeling generally wrecked and now I have a slight pain beside my belly button. I worry that the results will show all kinds of disasterous things that will push my stage much further than they thought after the biopsy.

I've always been a real worrier and this three week wait has just felt inhumane. Did anyone else struggle with severe anxiety during this stage of the process? Did you feel sick, when you hadn't before diagnosis? I'd love to know that I'm not alone in feeling this way, and that other people felt things would be really bad but turned out ok and manageable

Thanks in advance.

kira1234

The way you're feeling is very normal. Did your doctor give you anything for anxiety? I had to request some meds but he was willing to prescribe

Elfmcg

hi kira1234,

Yes my GP prescribed Xanax, but to be honest, I take them at night sometimes, but they are not really helping that much.

I'm 35, I just hope I get through this, it's so hard

kira1234

Have you gone to the thread for young people with breast cancer? I'm sure you'd find a lot of support there. I was 56 with my first diagnosis and I'm 64 with this diagnosis

Elfmcg

I actually haven't posted there yet, but I will have a look. Thabks