Newby with question about lobular secondaries

ruthie1967 · October 2013

Hi, I'm new here, and am from Australia.

I was diagnosed with ILC in February 2013 - have had left mastectomy, AND 5/15 nodes, 85mm, hormone +ve, HER2-, have had expander in place, FEC-D and 25 Rads to chest wall, IMC and Supra Clav region. I'm currently in limbo waiting for implant exchange, ?oophorectomy/hysterectomy, ?prophylactic right breast Mx.

No, I have not been diagnosed with any secondaries

But!

I have mostly pain over my stomach and over my right side (liver?) daily, at night, after eating just under my ribs - my post chemo/rads CT scan with contrast was clear.

I mentioned my symptoms to my oncologist last week at the post rads apptmt who suggested that the Orudis I've been taking from time to time for my back/hip pain must be irritating the lining of my tummy. But I think the last time I took it would be well over 3 weeks ago. I have reduced appetite somewhat, and feel bloated. I have had these tummy aches since before being diagnosed with ILC in February 2013 - and was investigated for helicobactor (stomach ulcer) at the end of 2012 which was negative. Monday (tomorrow) I am having an ultrasound as my GP suspects gall bladder???

My right hip also aches incessantly which is so annoying. The scan shows my hip is sclerotic, which I guess is degenerative. These pains all wake me at night.

I'm just wondering if anyone else has lobular secondaries , abdo ones, and how they started, what the symptoms are like, what to look out for...I'm thinking of demanding an endoscopy and colonoscopy.

ruthie1967 · October 2013

Sorry but I don't know why the text above has happened,and I've tried deleting it! Sorry.

Ariom · October 2013

Hi Ruthie, another Aussie here!

I have a different Dx to you, but have been having right side pain issues too. I got Mondors Cording right down the front of my ribs and abdomen after my surgery, so I think this all got a bit messed up with the discomfort from that.

My GP thinks it is gallbladder too. I had a scan done some time ago which showed stones, but since they weren't really an issue we did nothing. In the meantime my daughter had right side pain, bloating and reduced appetite, she had the gallbladder out, and is a different girl! Feeling much better in every way.

I know your question was referring to secondaries, but just thought I'd let you know it could be just the gallbladder. Funny how we say "Just the...." when before this it would have been a big deal! This is the only place we can say, "I am so pleased you have arthritis in your...!" well, you know what I mean!

I would certainly push for the endoscopy and colonoscopy if that is what you want.

I am sure there will be someone along who can answer your specific questions. It can be a bit quiet here on the weekends, especially the US girls. There is a specific Australia and New Zealand thread with some lovely ladies who may be able to shed some light on your query.

I wish you all the very best! Take care!

Momine · October 2013

I have had that right side, just under the ribs pain on and off for years, before and after DX. I have told the docs several times, but I have been scanned and checked backwards and forwards several times (3 CTs, 2 MRIs and 3 bone scans in 2 years) and they can't find anything wrong with me.

However, after a year and a bit of eating a diet low in animal fat and eggs, to keep the AI from raising my cholesterol, the pain has almost disappeared and all my blood work is coming back with excellent numbers. I did not have anything abnormal before and my cholesterol was never very high, but some of the liver function numbers were on the high side of normal.

Racy · October 2013

Welcome Ruthie, I am in Brisbane.

Did you have chemo and are you on hormone therapy?

We Aussie ladies are meeting up in Sydney on the weekend of Friday 29 Nov to Sunday 1 December. It would be great if you can join us. I'll 'bump' the topic for you.

I had lobular cancer too and know it can spread to unusual places. But if you take all the recommended treatments and trust your oncologist, that is about the best you can do, in my opinion.

Hope to see you in Sydney!

ruthie1967 · October 2013

Hi! Thanks so much for responding to me! I have been reading research articles you see, about how lobular can spread, how it's a bit different to ductal. How its difficult to detect. When mine was detected it was 8.5cm big in the left breast. 2 nodes had extra capsular spread. After surgery they realised a node in my internal mammary chain was enlarged as well with CT, although the lymphoscintagram didn't drain that way before surgery. After chemo and rads it had gone back to normal size so they said it was cancer!..

I guess I'm just wanting to know what symptoms to be on the lookout for which will alert us to possible secondaries so it can be dealt with. What others have experienced..... Articles say that abdominal secondaries can have vague symptoms (nausea, vomiting, bloating, constipation, blood in stools) and difficult to detect on CT scan because of the way it grows. One article says bowel wall thickening on CT is a sign ..http://www.ajronline.org/doi/full/10.2214/ajr.175.3.1750795. I've had all the vague symptoms, plus pain with bowel movements, but I also have a history of endometriosis, so am used to chronic abdominal pain. The upper abdominal pain is relatively new though.

But many CT scans are just normal. I worry that technicians don't all know what to look for! I had scans from the age of 40 which were all supposedly clear, then whammo all of a sudden the thing was 8.5cm big! Either it's very hard to detect or some technicians just don't see the signs. . .? In one article they recommend more closer gastrointestinal follow up for ILC candidates... http://www.jcancer.org/v03p0328.htm

Today I have the ultrasound to check my gall bladder, then tomorrow I see my breast surgeon again to reinflate the expander after finishing rads. I'm supposed to have implant exchange sometime at the end of November. I also need to decide about possible prophylactic removal of the right breast. Anyone else go down this path?

kt1966 · October 2013

Hi from NZ Ruthie.

I've just had a pmx 10 years after my original mx for ILC (also had a bit of IDC in the mix). I'm only 2 1/2 weeks out from surgery so still recovering- once I'm comfortable again I will be very happy with my decision!

I too have read about how ILC & ILC mets are hard to detect. I finally had enough of having yearly mammos & US that didn't give me peace of mind despite them being clear. It will be such a relief not to have any more.

As for detecting mets- well who knows....I keep reading that early detection doesn't matter in the long run, the outcome will be the same, but I don't know....

I had a scare a couple of years ago with rising tumour markers but all the scans were clear... I got put on new drugs (zoladex & letrozole) just in case & the markers have come back down. So what that means I don't know....

I hope your scans come back ok & any treatment you're on deals to any remaining c cells!

kt

Australia · October 2013

Hey Ruth, it's Gail, was very excited to see you here, but of course not what you are going through. I am sorry to hear you are still suffering and hope you can get some answers here. Speaking of the techs when it was private my onc used to check all my scans himself as he didn't trust the techs after his dad died of cancer and it was missed. I am public now and it will be interesting to see if my onc now does the same for me, I have my doubts. Thinking of you. Xxxx

wallycat · October 2013

Sorry to hear you are having pains and fears.

Your right side also houses gallbladder, which is very common (gallstones) in women, especially after 40. These used to be hard to image even when present and they can be a very colic-like feeling since the pain only presents when a stone is blocking the bile-duct.

You did not say how old you are, so I will assume that you are at least in your late-40s/50s...and as my onco said...pain as we get older is just a given (I think she was trying to alleviate my worries when I had HORRIFIC hip pain)...turns out mine was a bursa from doing some intermittent race-walking.

I have been told no extra tests unless I complain with a symptom, which is unnerving. They tell me to wait 2 weeks for any complaint before I should give it credence.

My personal feeling is you are too soon in DX to have mets. You have not stated your lymph node status, grade of tumor.

Best to you. I'd kill for some aussie macadamia nuts right now!!!

4sewwhat · October 2013

HI Ruthie,

Just saw this new thread. Gallbladder can cause some weird pain that would not make you think hey, that's the gallbladder! So that might well be what is giving you trouble. I have attacks and should have had that bugger removed years ago. It can really be painful and make you feel awful even when not in the middle of an attack.

I have done extensive research on lobular . I don't have the links in front of me, but I do know it does not always met the same directions ductal does. If you have been having this pain for a while, I do think it would be a reasonable request to ask for the colonoscopy. Not to scare you but one of the places it can met if the GI tract. It also can met to the ovaries and go leptomeningeal (like Valerie Harper, although hers was from lung cancer).

I too agree it is way too soon for you to worry about mets. It is hard not to worry, but try to keep a positive thought that they will find a boring reason for your troubles! That said though, it is not unreasonable for you to ask for tests and scans to rule things out, even if it is just for peace of mind.

Best of luck for you!

Rdrunner · October 2013

im having a similar pain and also my left hip. having ultrasound for liver this week. a ct scan for chest (done because i have sarcoidosis that flared up during chemo) showed fatty liver in july, although 3 ct of chest in may and june it was fine. my cholestrol etc it excellent and im thin and i dont drink. at a confernce recently i asked a radiologist about detecting ilc in other organs or elsewhere outside the breast and she said i yes , it still really difficult to detect.

I have read that tamoxifen can cause liver changes so that might be it for me.. i guess we will see. I wonder when the docs say it doesnt matter when they catch mets the outcome is the same.. that doesnt make sense to me, if they are caught early surely the progression can be slowed down at least. i know the outcome eventually will be the same but heck two years even it a huge amount of time when i thimk of my kids needing me . it drives me nuts when they treat us like stats without lives and or needs and wants.

errr thats my rant

toomuch · October 2013

Ruthie - the pain in the upper right side does sound like it could be gallbladder. But the feeling full and bloating can sometimes indicate pelvic issues. Have you had a gynecologic exam recently. If not, you may want to think about scheduling an appointment for one too.

ruthie1967 · October 2013

Thanks for all your replies! Hi Gail! I believe Fighter is here too from time to time...

I'm tired today, so lying down this arvo. I had my ultrasound today, checking gallbladder etc, and had to fast for 6 hrs so skipped breakfast and get results from GP tomorrow morning.. I also have had 2 kids home sick!

Wallycat - I thought I'd put my node status on the signature , sorry about that but I had missed the 'number of nodes removed' section. I'm 5/15 nodes, grade 2.

I'm also 46 (hence 1967) and mum to 4 girls aged 14, 12 and twins aged 8.

I did know it could met to GI, but not leptomeningeal. Sewwhat, what's oncotype13? Exactly! about being around for the kids RdRunner - and yes, I'm not just an anxious cancer patient. I just want to be informed, be aware, make the best decisions I can and know what to look for if I need to and get on with my life. I live with chronic pain already, am relatively fit, I'm a busy mum, and I was working 2 part time jobs before this happened. I hadn't planned on getting back to work until I have everything sorted, maybe early next year, or some small contract jobs before the next lot of surgery if I can manage it.

It seems many decide (or are advised?) to have prophylactic mastectomy of the contralateral side. I was initially adamant to have the right side lopped as well but my surgeon discouraged me and said wait until after treatment and see what you think/feel then. I have a family to bring up and want to make it as low stress as possible (as low stress as you can make it now this has happened!) well, I'm having the discussion again tomorrow when I see him.....

Toomuch, I also have appointmt with gynae-onc on 5th November to talk oophorectomy and maybe hysterectomy. 2 years ago my endometriosis surgeon said no more laparoscopies for you! Hysterectomy now! And I said hmm no thanks, I don't have 3-4 weeks I can take off work! But now things are different. My onc is thinking AIs rather than Tamoxifen, so I'm on nothing (in chemopause) at the moment while waiting. And if its AIs I need to be post menopausal , so lots to consider.

Also, if its too early to be thinking about mets now, when is the critical time that it could come back? 2 years? 5years? That's something I didn't think to ask my onc, and will ask my surgeon tomorrow....

Wish me luck with getting the expander filled again, I have some radiation fibrosis / cording under my armpit and I tell you what, that's annoying.

ruthie1967 · October 2013

Oncotype

Ok , my limited understanding with a quick google, ...... the higher the oncotype number, the higher the risk it might come back? And it helps to decide if chemo is worthwhile?

Momine · October 2013

Ruth, I opted to lop off both. I have no regrets. The first surgeon refused, on the grounds that he didn't want to amputate healthy tissue. The second guy agreed. He said it was not supported by the literature, but that he could understand why I wanted it done. The path showed LCIS.

I am glad you are getting the ultrasound and I hope it brings you peace of mind. It is so difficult to find the balance with how much to worry. I struggle with it myself.

4sewwhat · October 2013

Hi Ruthie!

Just wanted to chime in a bit. My surgeon did convey that lobular is more likely to show up in the other breast. You and I have very similar pathology, only I have more nodes :0( But then I went to get a lump checked 2/12 and they blew me off, said dense tissue, come back in a year. I had a lot going on and kick myself now for not pushing. Live and learn!

I also had an oncotype of 13. I did TC chemo x 4.

I also have 4 kids about the ages of yours! (9, 11, 14, & 16). Yes they will keep you busy!

I did both mastectomies, but not at the same time because I was recovering from a broken ankle too. I did the prophy left on 9/18 just before I started rads because if they found anything, I only wanted to do rads once.

What they did find was "atypical lobular hyperplasia", so basically precancerous. I see so many posts from ladies that had prophy and something turned up. It is really scary for us all!

My thinking in doing both was NO breeding ground left behind! I wanted to minimize, to the best of my ability, any chance it could come back.

I have asked my GYN for a hysterectomy/oopherectomy and she is scheduling me. She called to confer with my onc and he told her it is not necessary and he doesn't recommend it. WTH?? Wonder what he would recommend if it were his wife, sister, or daughter? I am doing it anyhow! I feel like it could be a ticking time bomb and I have enough to keep monitoring. I don't want that over my head too.

Best of luck to you. Gallbladder surgery is easy. Going to do mine as soon as I can. Hope they find a solution for your pain soon.

Hugs and prayers!

Mompsych · October 2013

hi all,

I have generally been posting in the stage IV forum, but I started with ILC about 10 years ago and opted for a double mastectomy. After chemo, tamoxifen and and AI, I was ok for 7 years, then my tumor markers started climbing. Onc had me get a PET scan which showed bone mets in my hip and spine. I was also having gastrointestinal issues and the ILC was found in the lining of my stomach after an endoscopy! Stupid sneaky cancer. If you are having gastrointestinal sx, think about getting scoped and biopsied.

I began taking abraxane (a taxol-type drug) which kept me stable for 9 months, but tumor markers and CTCs were creeping up, so I am now on Xeloda. So, we shall see...

Good luck to all of you out there dealing with this!!

Momine · October 2013

Mompsych, it really is a sneaky bastard, I am so sorry yours progressed. When you say gastro issues, what sorts of things? (If you don't mind telling.)

I lived in your area for several years, btw. Larchmont is very nice.

Mompsych · October 2013

hi momine,

To clarify, bone mets were found about a year and a half before the gastro sx. I was on xgeva and aromasin then. Gastro sx started with some reflux, then uncomfortable dystended stomach, and eventually a lot of barfing. For me, the cancer cells in the lining of mu stomach seemed to have caused some gastroparesis, which is a slowing down of digestion. Tons of fun.

Hope the femara continues to work for you for a very long time!

Momine · October 2013

Mompsych, thanks very much, that is sort of what I was imagining, but good to know. Yes, I hope the femara will keep me safe a long time. So far, so good.

ruthie1967 · October 2013

Thanks ladies, hearing others stories and experiences helps put things into a perspective.

I got my results from the abdominal ultrasound and it said I have multiple polyps in the gall bladder the largest being 17mm - which has doubled in size since 2010 (because I had epigastric pain then and actually forgot I had an ultrasound in 2010!). I also have a 6.7 mm lesion in the liver (they think a cavernous haemangioma) and a septated cyst 15mm diameter in my right kidney. I don't have gall stones! I saw my breast surgeon yesterday and I asked him if lobular can metastasise to the gall bladder and he said not that he had heard of, but perhaps I should have it out... he didn't comment about the other things so I'm guessing they're not important but I'm still thinking it smells fishy. so I've googled gall bladder polyps, as you do, and it says if they are greater than 10mm best to get them out and check them in case they are cancer.. Great!

I see the gynae-onc next Tuesday about having an oophorectomy etc so will bring it up then, but I really needed to speak to my MO about my priorities.

So I spoke with her by phone today and she says to get the referral from my GP to a gastro-enterologist - and get the ball rolling for a gastroscopy/cholecystectomy but get onto the oophorectomy/etc and sort out my hormones first. I then asked her 'what about cancer markers, would that info help?' and she was a bit almost terse with me - saying I've got to stop it with all these investigations that they are just going to turn up more incidental findings which are irrelevant. I said calmly to her, I'm having the investigations because I have symptoms and aren't the polyps significant???? I actually also have stomach pain, right pelvic/hip pain which I haven't pushed to be investigated. I have some sclerosis in my right hip joint so I suppose that could just be degeneration - I am 46.

The thing is, the liver thing and the kidney thing and the gall bladder things didn't get commented on in the CT scan (with contrast) I had 3 weeks ago. Why is that I wonder? In relation to the right prophylactic mastectomy - I mentioned the ridging I'd noticed to my breast surgeon and he said that when you hit menopause the breast tissue starts to change - so the thickening could be due to that. But I wonder - the thickening would be more universal wouldn't it, not just along a particular ridge/side of the breast?? I really think I probably need to talk to another medical oncologist about all of this as my thoughts are

I want a gastroscopy/colonoscopy - I need to get the gall bladder out.

I want a prophylactic right mastectomy - but when?

I have 4 kids and need to be thinking about getting back to work - I was thinking next year but maybe that's not realistic. I wanted to get all the surgery out of the way by the end of the year so I can just recover.

A DIEP can take up to 6 months to recover from I hear, although the results are spectacular so maybe my options are implants - more practical with the kids and getting back to work. ?

Does anyone know about risk of recurrence into a DIEP reconstruction?

ruthie1967 · October 2013

Sewwhat, broken ankle as well? that's a huge year for you.. on top of everything else! I hope the ooph/hyster surgery goes ok and gives some peace of mind.... I'm just waiting now to see the gynae-onc surgeon next Tuesday to organise 'the plan'.

Mompsych - my fear is that it will be in my stomach/GI - like what you've experienced! - it is so difficult to detect on scans from what I've read and seeming I have stomach pain and nausea (it's like a lead lump in my stomach - and under my right ribs also) - not so much reflux - but I've been prescribed Nexium but not sure if it's doing anything. I hope the Xeloda does the trick for you.

Momine - is Femara an AI? like Arimidex? I'm still learning about all the drugs - Im still in limbo about what they will put me on, so currently taking nothing.

Racy · October 2013

Ruthie, so many questions. Best to deal with one at a time and the right doctor for each as you are doing. Get the referral to gastric specialist for your gall bladder and any intestinal concerns, gynaecologist for oophrectomy and onc for the bone pain.

Chances are there are benign explanations for your concerns and that is why your onc is not taking them too seriously. But she should not be dismissive and if you are not happy with her bedside manner you can find another onc.

Keep dealing with your list of concerns and let us know how you are getting on.

Momine · October 2013

Ruthie, yes, femara is a brand name for the drug letrozole, which is an AI. My doc feels that letrozole is the best of the AIs, but I think that is just observation/experience. However, AIs did come out ahead of tamox in a recent study, especially for lobular cancer. Because I had not yet entered menopause at DX, we yanked my ovaries in order for me to go on the femara. My mom had ovarian cancer a few years ago and her sister had endometrial cancer, so that history factored in as well.

ruthie1967 · November 2013

Momine, sounds like what they want to do with me, make me definitely post menopausal so I can take AI's.

Racy, I've sort of stopped doing things for the moment..... I am having a weekend of social things that are distracting me... But I plan on getting to the doc later today to talk about gastro-ent referral. It's the head in the sand trick for a few days!

I've also had a look on Internet for articles about gallbladder and ILC. (Because thats what i do, i look things up If anyone is interested I will attach so you can read. It's rare, so hopefully that's meaning it will all be ok.

http://www.ncbi.nlm.nih.gov/pubmed/22041804

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC502394/?page=1. (Article is from 1990 so quite old)

http://www.hindawi.com/crim/pathology/2011/806570/

Racy · November 2013

Ruthie, keep in touch. You may be feeling better by end of November and want to catch up with us in Sydney. We would love to meet you!

ruthie1967 · November 2013

hi ladies,

I can't sleep tonight. I find if I don't take the sleeping tablet, I wake at 2am or 3 am, it's so annoying.

I saw the gynae-onc surgeon on Tuesday about my ovaries, and also showed her my ultrasound about my gallbladder, etc. she agreed the gallbladder should come out, and said she could organise it with a gastro colleague and do the surgery at the same time as my ovaries. My endometriosis history means there is high possibility the removal of ovaries could be a little more difficult due to adhesions and if they are stuck to my uterus etc I might have a hysterectomy as well. So she advised to have all the surgery in about 2 weeks, which now means not this week coming but the following week. She also said that the prophylactic should be scheduled for early next year- she recommends to do it as its so difficult to see, I told her about the ridging in the outer aspect on my right breast... She didn't even examine me, she just said do the prophylactic ! I asked why the ultrasound results for the gallbladder and kidney cyst etc didn't show up in the CT scan, and she reached to check the scans and said 'they didn't do the slices thinly enough to pick it up. ' WHICH FLOORED ME! Isn't that effectively useless?

I feel so much more confident in seeing this doctor, she has confirmed everything and validated my concerns. She is being proactive, she hears me, she sees me. I'm so glad I saw her!

I saw the radio-onc for a follow up then on Thursday and she said my skin was fabulous after rads, one good thing in the mix of crap! She checked the ridging in my right breast too and made me ring for an ultrasound/mammo there in the rooms, and I'm getting it done Monday before I see the breast surgeon again Tuesday.

So that's what's happening. I'm a bit freaked. But have been keeping myself distracted as best I can. I've told my eldest two daughters Im having surgery to remove my ovaries, but not totally everything because I don't want to worry the eldest in particular. I figured if anything is found with my right breast or gallbladder, talk about that then. I'm working on how to tell the twins and might wait until closer to the date as I don't want them worrying for that length of time (and I know one will worry) better to wait until I know what's happening and when. I actually haven't told anyone about my right breast.

My ex has indicated he's happy to look after the kids while I'm in hospital but is insisting he will have to move into my house to do it, that they can't just go down to his place. (He chooses to live in a 2 bed unit, and I understand it would be harder, but it still doesn't feel right.) My mother can't come down to help that week as she has a few commitments. When I had the mastectomy I had mum and my stepdad there at the house looking after the kids. I was firm and insisted that my ex not move in with the kids. He also insisted he move in to help during chemo but I refused. I've tried so hard to maintain boundaries, but now, I don't give a rats. I figure - fine ok. I don't care any more! It feels emotionally dangerous but what else can I do? I'm looking into a temporary live-in nanny for a few weeks.... We have the spare room and that will keep the cost down. I could put an ad in the paper.... But it might be easier and quicker to go thru an agency. I won't be able to drive or lift I'm guessing for 4 wks post surgery..

Far out! Life can really dish it out sometimes.

Sending some love and light to everyone dealing with this disease.

Seattle_questions · April 2014

Mompsych,

I just got diagnosed with ILC mets to the stomach. It was found on endoscopy but my PET/CT found no evidence of disease. I'm having a bone scan tomorrow and consult with a thorasic surgeon on Tuesday. What have you tried, who do you see, what do you know???? I could use some help!

Joyce

Newby with question about lobular secondaries

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