Team ILC Warriors
Comments
-
While I am overweight and had minimal LE in my arm, it is definitely a generalized staetment that only overweight get this. I know a few who are slim or at least not overweight with it.
Although hormone tests showed I was post-meno, my body didn't know it and was still having periods. Since I couldn't take Tamoxifen for genetic reasons, I was switched to the AIs. To do that, I did have a Lupron injection. In April I'll go for another one. That will have covered a year by the time it is ineffective so hopefully I'll be done with that.
Hope all are having a pleasant Sunday
0 -
I thought it was a bit sweeping but its what I was told by the Consultant....
0 -
I am just so against chemo as it is so toxic and hurts the immune system...if the cancer comes back, nothing left to fight it. If I did any chemo, it would be low dose IPT...I just found out also if I get my ovaries out, the body still does produce estrogen, which is why HT is still recommended...I am also considering Hyperthermia to get rid of any circulating cancer cells...decisions.
0 -
There are other things for circulating tumours cells (and you can get those measured by a special blood test too which is NOT a tumour marker test but something more detailed) - such as Salvestrol and Vascustatin and Indole 3 Carbinol........amongst others......
Do you naturally have a low body temperature? Hyperthermia can work best for people who do.......
What is IPT?
0 -
Regarding having the ovaries removed, I am 44 my OBGYN said the only way they would do it was if BRCA+, waiting on results now. MO did blood work to see if premenopausal, and I am not. I had a uterus ablation 15 months ago so no periods. I am very interested in the DIM, I asked and MO told me you NEED the tamoxifen and to not take it you are risking your health.. I think he is hoping to scare me into it and it might work.
I had 0/2 nodes but with isolated tumor cell hanging around. Still MO said No chemo, he said the risk to my heart and liver were not worth the benefit. He said with my high receptors (ER PR off the charts) I would benefit 0-1% with chemo. I thought he would want me to have it due to that dang isolated cell. This scares me more than I will admit to anyone else.
I am okay with the rads. Fear there is doing damage and if it returns I will have a harder time with reconstruction. If it comes back I would have them both removed without even a question in my mind. I may end up doing it now if I cant learn to stop worrying.
I seem to be seeing doctors that are high on breast and ovary conservation. I plan on being here another 44 years I am not sure if I can relax.
Welcome to those that have joined us here, we are all glad you are here to share with us.
0 -
Lily,
No idea what Salvestrol, vascustatin or Indole 3 carbinol are but I am going to look them up now.
I wish you were here in the US. Its not fair to put a patient through this amount of waiting and stress they do to you. 8 months is unacceptable, 8 days is torture, I cant imagine. Sorry you have to add this type of stress to your illness. I am glad you are here. I am sorry you are feeling down about those around you.
I posted this elsewhere, dont think I shared it here. I found this online and it has helped me, I can relate as I am sure all of you can-
Good article if you have a minute.
0 -
IPT is Insulin Potentiality Therapy...Low dose chemo using insulin to get into the targeted cancer cells without damaging good cells in the process...hence, saving the immune system! Problem is, insurance may not always cover it. It has been around a long time with much success! I do have low body temp, so am seriously considering hyperthermia. I am going to try and find a doctor who will do a baseline tumor marker test on me...wish i had it done before surgery to measure if I have metastasis now 6 weeks after surgery. My onc refuses to do the test. I am on the fence about getting ovaries out. If I keep them in, I read that DIM, Melatonin and lugol's iodine protocol can keep estrogen in check!!!
Oh...My estrogen score was 80% and prog was 90%...I am assuming those are high?
0 -
joellelee
Your scores are high. I have read about the DIM, Melatonin and iodine. I am also interested in they prove to be affective. Do they test our hormone levels thoughout taking the tamox for the 5-10 yrs? If not how do they know if is working or worth it?
My Onco also does not do any type of tumor marker test, he says they are unreliable and a waste of time and money, cause alot of anxiety.
I am doing a clinical study where Case Western in Cleveland is trying to find a tumor marker for BC, similiar to the PSA for prostate cancer. Hope that my samples and mammo's etc. will help to one day help others and ourselves. Amazing all the money given to BC.0 -
Hi Lemon
I thought I would chime in- stage 1 grade 1 ILC onco 1. I had ITC- I had one biopsy that lasted 2.5 hours ( poor choice on my part for surgeon- the first biopsy). My breast cancer surgeon and his partner have assured me the following- we don't test for those anymore because its meaningless. I originally worried a great deal. I am close to 52 and finally this week I am seeing a highly rated super mo in the big city and I am consulting about having my ovaries removed (I am a tami failure). During my journey the last few months I have heard that they don't want to take ovaries out of women who are under 50 due to complications such as cognitive issues. Anyway, I am still not sure what I will do but this is the week. Also, possibly lupron will be back on the table.
Good luck,
CR
0 -
Interesting about the cognitive issues...I will have to look into that! A naturopath I have been connected with said that statistically, yes, tumor markers can be unreliable as a whole..but, singularly when you start with a baseline for yourself along with scans then you can measure pretty reliably against yourself..
0 -
Hi Chocolaterocks.- thank you for telling me that about the ITC.. it does make me feel much better.
I had not heard about the cognitive issues when removing the ovaries. I had thought it was due to osteoporosis, among other less significant effects.
Joellelee- The markers do make sense when you put it that way, I will put it that way when I see him next, thanks to you too.
0 -
Circulating tumor cell tests are NOT the same as tumor marker tests which are unreliable - google ctc and dr hembry for info and we create oestrogen after menopause so ovary removal not significant in terms of oestrogen levels after - I was almost 100 percent for pr and Er .......
My tumor marker test last year gave me false confidence as I was we'll within normal range but 3 weeks later diag stage 3 with positive nodes
Not sure CTC avail in USA but you can arrange it as testing is done in Greece0 -
Btw, Joellee I too am 80% Estrogen and 90% Progesteron. BS said he'd never ever seen some one like that. So, I'm glad to "meet" you.
Was told it makes no difference, will be treated with hormonal therapy because of the positive estrogen.0 -
HI, I admire those of you who are so new to this and yet are trying to stay sane while sifting through the mounds of info. I remember those first days, months as being a blur. Until the dx I was so boring medically, was basically healthy and didn't think much about my health. Just led a typically busy working Mom's life. Maybe neglected myself a bit, like most working moms, but trusted my body to be Old Reliable even if I ignored it. What a wake up call. I went from being a smart professional woman to being a blubbering idiot who needed my husband to come with me to medical appointments so he could remind me of what had just happened. I was often too in shock to comprehend simple facts. I would even shake some times during the appointments. So, Ladies, anything goes at the beginning. Allow yourselves to even be in a bit of shock, and taking someone with you and/or writing things down at appointments was helpful to me.
I read with interest about some of your decisions to forego chemo. Have you all had the oncotype test? It's rather standard of care now for early stage ER/PR + BC that is node negative (and even some node positive, Ive heard.) This seems to be the leading indicator of whether or not chemo will be recommended. I had a score of 17 which is the high end of the low range and three oncs were adamently against my getting chemo even though it scared me not to 'throw everything' at the cancer. They said it would do more harm than good in my case and that hormonal therapy was very effective. I chose the onc that also recommended a three year (twice yearly) IV infusion of 4mg of Zometa. Though its not FDA approved for this, some studies have shown that it can prevent recurrences in cases like ours. No harm except you need dental clearance as there can be nasty dental complications. Actually quite an ordeal for me with my bad teeth but forced me to get my mouth in shape, an added benefit.
Re ovary removal. I had had a hysterectomy in 2008 for a gigantic fibroid. At the time I was 47 and they suggested not removing the ovaries for the reasons you mention. (Added benefit in old age to the heart and brain.) When I was dx with BC at 49, and tested negative for BRCA, an ooph wasn't mentioned and I started taking tamoxifen as I was still premenopausal (no periods but can tell by blood levels of hormones.) I had the rare side effect while on tamoxifen of having my ovaries become overactive. My estradiol levels went through the roof, something you don't want wiht a BC dx. Though the tamoxifen hopefully protects against this overabundance of estrogen in the system, they still had to deal with this. The oncological gynecologists suggested getting lupron shots until I naturally went into menopause, hopefully for just a year or two. Six months of lupron shots later, I decided to go for the ooph. I read about lupron and decided that I preferred a mechanical solution to a chemical one. Lupron is a potent drug that impacts many systems. I felt ok on it, though I was super moody but it made me nervous and who knew how long pre menopause could last. I also had cousins w BC who had had oophs for one reason or another and a bit of ovarian cancer in teh family so I decided that it would be nice to not have to worry about ovarian cancer, too. I had the oooph a little more than a year ago. (Easy if done laproscopically) Finished my 2.5 years on tamoxifen and jsut recently switched to femara. Though I'm not loving Femara (never experienced such fatigue) I am determined to stay on it and overcome any SE's since it's supposed to be very good against ILC.
To those newbies here, I'd also say that the thing that I think helped me the most emotionally was to take back control of the things in my life that were within my control. I made life a bit saner, working less, trying to do more of what I wanted, less of what was extraneous. (Made one of my best employees a partner, lessening the pressure on me.) Changed my diet drastically. Organic and hormone free. Almost vegetarian. Try to exercise an hour a day even if it's only walking. Try try try not to let the little things get to me, though that's still very hard for me. Cancer has given me better perspective.
Having a hard time this past week. A good friend who was dx same time as me, though with aggressive TN disease, has seen the BC return, all over. Also was dx w pancreatic cancer. This is apparently very rare but it is scaring me nonetheless. Also very hard to be brave for her by phone and then stay up all night thinking what would i do if I were her. I know it's not logical. She's not me, but hard not to go there after being once traumatized with shocking bad news at that initital mammogram.
Sorry to go on and on. Nice talking to all of you. Thanks for listening. Hope there were glimmers of sense in all of this that were helpful,
Shari
0 -
Forgot to mention that I also had a lone circulating tumor cell in one of the path reports (had it taken to a second path lab for a second opinion-was very neurotic.) Everyone said to ignore it, it is still seen as node negative, and they don't treat it. I've decided to put this one worry to rest. According to Dr David Servain Schreiber in his book, 'Anti-Cancer,' we all have cancer cells in our bodies. The main thing is to strengthen your terrain to make it inhospitable to growth (Great book.) through healthy living.
0 -
@Lily...I have heard that BOTh circulating tumor cell test and test marker blood tests can both be unreliable.....Gosh, what to do? Just wait for symptoms??? Just do the best we can??? I love meeting all of you! So glad some others like me are refusing chemo as it's so hard to go against the grain!
@Galsal....Wow! I didn't know we were that extraordinarily high for estrogen/progesterone? They didn't mention anything to me...now I am scared??? What did you mean when you wroote 'it makes no difference'...does that mean same treatment? I am sure it also means we would have a higher rate or recurrance??? yikes
@sgreearch....So happy to read what you had written, but sooo sorry for your friend. I guess, we all just have to live one day at a time no matter what disease or hardship comes our way, otherwise all of those days would be wasted if we weren't enjoying them to the fullest. I am SO on the fence about removing ovaries...I need to do more research. So afraid of Tamoxifen....I agree we all have cells in our body, maybe our best bet is try to control the hormones through diet, exercise, supplements, HT etc etc...anyone here thinking radiation would help? I know it doens't help prevent metastasis, but I am afraid of recurrance on my breast (I had double masectomy/recon DIEP)...I wonder what the stats are for our ILC for recurrance there???
XXXXOOOO
0 -
@ Joellelee and Galsal, I'm also quite high with my ER/PR at 80/80! I have an appointment this Wednesday with my BS and will ask a bit more about those numbers. Am also concerned with tamoxifen as my maternal grandmother had endometrial cancer and maternal great grandmother had ovarian cancer. I am 44 though so I don't think they'll want me to do an ooph. Although I'd love to get rid of them! Still waiting on oncotype result and have first meeting with MO on Friday to discuss result (if its in). I'm a ball of nerves!
@ Shari, thank you so much for your perspective, especially to this newbie! You are an inspiration! 😃 I have a lot more to think about and question. I'm so sorry to hear about your friend. I cannot imagine what you must be feeling.
@ Lily, I've been thinking of you a lot lately. Im sorry you've been feeling sad. I hope you're doing better. Just know that we are here for you! ((((HUGS))))0 -
Dear all,
My onc. doesn't do the tumor tests (markers and oncotype) either. Claims like others they aren't reliable. All she does for me every three months is a physical exam and from what I can see, a CBC. I'm coming up on 1 year since ending chemo, and will see her of course for my regular check up. As an ILCr, what should I ask her to do?
It's kind of like I feel as though I'm flying blind. I did have 6 positive nodes, and a very close but clear margin on my lumpectomy, so I'm still pretty frightened. I'm very strong ER/PR+. Taking tamoxifen now. Also did rads, 33 of them, following chemo.
I have an appt to see a naturopathic oncologist just before my next checkup with my MO. And I am getting a bmx/recon in June. I just wonder--is that enough? Do I need to ask for another PET scan or breast MRI soon?
Finally, someone asked on this thread about ILC and percentage of us that get it--I've always read around 10%, but I suppose it could be 15%. It doesn't really matter to me--I've had it, and it's different, and should be treated differently than IDC, I think; I'm uncomfortable knowing that the information that comes out seems to lump all b.c. together.
We are "special" cases and I wonder if we are really looked at and treated by our medical team that way.
Claire
0 -
Hi all-
I am just past 1 year DX. I am still alive and kicking and thinking quite differently than a year ago.
I am not as scared as i was in the beginning. In the beginning i was told i had ALOT of cancer and my prognosis not good but here i am still here and feeling pretty good overall so you really never know. It really is true each person is different.
I am hoping to have recon soon-still waiting for the go ahead i had BMX feb.2 2012
First they said 3 year wait for recon as i am such high risk but they recently said two years and now i am trying for one year.
My biggest fear is that i will have cancer that goes unnoticed again. I had cancer for many years and had mammo every year for 10 years and it showed nothing. And when lump was found it still showed nothing on mammo and US. I worry that it will creep into some other part of my body undetected. Anyone else feel this way since ILC is so darn sneaky
Going to browse more of your posts
Take care all
0 -
Thanks for creating this ILC group! Hope everyone is sharing the news and recovery experiences. We are small %, we still close and strong:)
Here is a new finding on this site, please check this out. I am on Tamaxfine now. However this research news is probably good for our group.
Femara Better Than Tamoxifen for Certain Types of Breast Cancer
0 -
Beth1965
I feel the same as you, nearly exactly. 1.5 years past dx. I had a clear mammo for 5 years running and dense breasts. I found my lump on my own which didn't show on mammos. It only showed on an u.s. after I told them where to look for it.
I am getting a bmx/recon in June. Can you tell me about your high risk status and explain why they asked you to wait 3 years? I'm considered high risk too, I guess, since I had 6 pos. nodes, although stage II and grade 1.
Claire in AZ
0 -
Regardless of the Progesteron being higher than the Estrogen, we'd still use the same hormone treatment is what the BS said.
No Tamoxifen for me, had a genetic blood factor before even started on Tamoxifen. It hadn't been found then though. I argued and argued about taking Tamox, since my Mother had clots in her lungs while on it after three years. That, plus her Mother had clot issues from a different nature. Three known generations with this - hope none of the Nieces and Nephews or my Son carry it.
I personally won't have elective surgery without precautions being taken by putting me on some Heparin or something at least a few days before.
0 -
Joellel - high hormone positivity does not make us higher risk, in some ways it reduces our risk as it means we are far more likely to respond to hormone suppression drugs - in simple terms it means that our cancer cells need oestrogen or progesterone for fuel to grow so we stop it getting the fuel.....but in about 10 years it will find a way around that so we need to kill off as many circulating cells as possible.
Personally I have more faith in circulating tumour cell tests and they give me a chance of attacking cells BEFORE they have metastasized and created a problem, its not perfect but it is a lot better than nothing...I am starting a regime of natural substances on top of what i am taking now for 3 months then will have more blood tests done so will see what happens.......tumour marker tests I do not find accurate at all.
Went to hospital today, sat and waited for results. They had not received them in clinic, told me to go to Admin to ask where they were and return
Returned 5 minutes later to advise where they were
30 minutes later - no they cannot be located, repeated my info and said what coujld I do ten as records show the report is in the hospital.....they decided to contact relevant departments
Waited another hour - finally called in
No sign of cancer!!!! Shows fibrosis on surgery side and high levels of fat in my remaining breast - need to translate the rest, but nno indication of any malignancy.....YEEAAY
ILC is hard to find and the best way of finding it is via MRI so all of us with ILC should have an annual MRI at very least for our monitoring.
0 -
Unfortunately, I am pre-menopausal...so, I cannot take Femara? Seems to be more effective...anyone having bad SE w/ Femara?
0 -
Thanks, Lily! That's good news!I have read, though, that they will not give anyone a circulating cell test unless you are metastatic! My onc will not give it to me...Is it hard to find someone who will? R U having any of the serious side effects from Femera? My onc also stated that once the cancer cells circulate, the cancer changes into another form once it metastasizes...This was her answer to my question about "if you say my cancer does not respond well to chemo before surgery, why are you recommending it after surgery"...
0 -
@clare - I had mammos and u/s that showed all clear right up to the day of my BMX. MRI showed some, but not all, of my tumor(s). It is scary and I hate to be a downer with my friends, but feel it's my duty to let them know that their own fingers are sometimes the best diagnostic tools available.
As far as radiation goes, it has been just over a year since I finished and I have come to think of rads as "the gift that keeps on giving". The difference between my left (MX only) and my right (MX, SNB & rads) is night and day. The left feels pretty normal with minimal damage. The right is tight, full of scar tissue and will "freeze up" if I go a couple of days without stretching. While I don't think I have LE, I do have a lot of puffy feelings in my left side/armpit. I don't think any of this is going away anytime soon.
I had micro fat transfers on both sides in an effort to prepare for reconstruction (TE's --> implants) and it has helped with some of the tightness. Some myofacial release therapy has also helped. But really, daily stretching is necessary to keep me feeling less than constricted in that area.
I have been on Tamoxifen for 13 months, but was told my estradiol was showing that I was finally menopausal, so if things stay there I will be switched to Femara. A bit worried about it as it seems the SE's are worse, but it's the best weapon in the hormonal world, so I will get through it.
0 -
I was just diagnosed with ILC on Thursday. I was scheduled for a lumpectomy on the right breast today but my doctor called me on Saturday to cancel. The MRI showed some "hotspots" on the right and several on the left. I met with him today and am doing genetic testing tomorrow. He is not telling me what to do but doesn't think that a double masectomy is a bad idea. Some of the pathology is still out but I am being told that the tumor is .5 cm, ER+, PR+ & HER-2 is still pending. Doctor said that this is good news. Not the kind of good news I'm used to but I'll guess I'll take it for now. The tightness in my chest is heavy but I am telling myself that I'm lucky it was found when it was. By the way - first mammogram ever (even though it wasn't picked up by it).
0 -
I paid for the circulating tumour cell test as I am lobular and need to get to them before they turn and metastatize - my understanding of that description is once the cells become 2mm, yes millimeters in size they seek out blood vessels and start to grow and once this has happened they eventually become large enough to see on scans etc, but when angiogenesis happens then we are creating mets....hopefully this link will help
http://www.angioworld.com/cancer.htm
As lobular is so hard to detect I decided anything that gave me prior info ahead of this stage would be useful for me, and my instinct told me this was right for me........and (when I am not overtaken by fear, panic or terror) my intuition and inner wisdom has proven to be a good guide for me in the past.......
The regime I am does lack cytotoxic elements so I am remedying that and also going to start taking some angiogenesis inhibitors........
0 -
hbfry101, I responded to your other "just diagnosed" post. I see you have gotten more info and so far it is good stuff.
0 -
Btw, I wasn't saying how they'd said it was high on the Estrogen level - merely that he told the Intern with him that he'd never seen a BC case where the Progesteron was a higher level of positive receptor positive than the Estrogen.
0
