Need some Advice

sftfemme65

Hi Everyone,

I have a very close and dear friend that just found out she has BC.  Its ILC.  I dont really know much about this so Im hoping to get some info from others.  Her tumor is pretty large somewhere between 4cm and 6cm, you know how it is until they remove it you never really know how big it is.  Anyways she isn't sure what her receptors are yet.  The BS she saw said she had a choice whether to have chemo first or surgery, any thoughts on this?  She wants a bilateral Mast. even though the BS said a lumpectomy is possible and I have to say, after reading a little bit it seems this would probably not be a bad idea.  She is very very nervous about the sentinal node biopsy, another thing I cant help with since I knew I had a node that was positive I skipped that part and just had the nodes removed.  Ive read all the horror stories on it, has anyone out there had a situation where it wasn't that bad at all???? Any advice is welcome and any suggestion on what she should ask her doctors is most welcome.  I know they are scheduling her for a breast MRI to check the other breast.

Thanks so much

Teresa

Survivor07

Hi Teresa,

My ILC was also pretty big when first discovered 8cm x 12cm.  My surgeon was ADAMANT that I have chemo first and then a mastectomy.  I asked him why so?  He said that chemo would start attacking the cancer now--including any microcells that my mastectomy might miss.  He also said that I would have to wait 4-6 weeks after surgery before starting chemo. Again, he didn't want me to have to wait for the chemo. I have had bc twice now and trust my surgeon's judgment and advise--he's the best.  So if he said chemo first and then surgery....that's what I did.  Just be there for your friend, listen, and hold her hand.

Gitane

My sentinel node biopsy was truly "not that bad".  I had the SNB before I had chemo because I wanted to know the status of nodes before.  I had dose dense (every 2 week schedule) chemo (ACx4), then bilat mast, then more chemo (ACx2) because some residual tumor cells were in the breast at surgery (though not much).  

I just want to add that chemo did work on ILC in my case.  I didn't have a pCR but I did have an excellent response.  My tumor was Grade 2, very low mitotic rate of 1, Her2 neg.  My ER level was strongly positive by IHC, but only 8.3 on the Oncotype DX test.  Some studies say lower ER level tumors have better response to chemo. 

Shaesallah

Teresa is indeed a Very Close and Dear Friend to me.  She is asking questions for me and I am sitting here in tears so Thankful for her. 

sftfemme65

Sherri thank you for your info.  I am really not completely up on ILC since I was diagnosed with IDC and trip neg to boot.  I am sure Shae will join in soon and find this place a wonderful info area like I did.  I not only found out so much but it was a safe and effective place to just vent about my anger, fear, sadness and confusion over all of it.

Teresa

Gitane

Shaesallah,  Hello.  Come here when you want to. I remember how my world was shaken when I was diagnosed.  I didn't know about this site then.  It's a good place to be when you need others who have walked this road.  Hugs. G.

Shaesallah

I am such an emotional wreck, not just from the cancer but for so many reasons.  I am Thankful that Teresa was able to start this for me.  She has been a help more that she will ever know.

I have questions and no answers, and when I try to put the questions in writing I cannot think what they are. 

As of right now I am still waiting for an appt. to get a MRI of the pther breast.  I HATE all this hurry up and WAIT.  I just wnt these things gone.

I am prone to ramble, I am sorry.  I am just hoping someone or everyone can share thier advice and knowledge with me.

spar2

I was diagnosed with ILC in Jan 2004, had mastectomy first, then chemo, waited several years before reconstruction.  Am doing great now.  It has probably been there for a while so you have some time to get everything done without a panic.  MRI is very important to make sure of the other breast.  You probably somewhere along the line will get a bone scan or pet imaging.  It is hard but it is doable.  Do you have a good support system?

So very nice to meet you, sorry about the circumstances.  Please keep in touch with us and let us know how you are doing.  sending you gentle hugs.

pepesmom

Teresa - what a wonderful friend you are! I was diagnosed in Sept. 2005. The SNB was not too bad - I ended up having a bilateral. I had a lumpectomy along with the SNB.

I am ILC & DCS. I agree that you should ask about an MRI to check the other breast. All my docs were shocked that I came out w/ 6 + nodes...so was I. I would also recommend a second opinion.

Take care, when I was first diagnosed I didn't think I was going to be able to make it through all the treatment, etc. I'm almost four years out and doing great. You will be o.k.- just hold now for the wild ride.

Know that we are all cheering you on!

Shaesallah

I have a surgeon bit no Onco uet....ssince I have no insurance and a Program clled EDP is covering this I am waiting on them to approve the MRI.  A wwk ago they did a biopsy in the office, they ended up having to use a scalpel to make 3 incisions, ever since then I have been tender and some burning sensation.  I have a low tolerance for pain but so far it is doable.  The Surgeon has mentioned the possibly doing SNB on each side after the MRI and uts results, but I have only found stories of how painful it is.   That really worries me.

For alittle about myself, I just turned 57 on the 10th, (was told on the 8th I have this cancer).  I have had one single bypass when I was 49, have high blood pressure (last doc visit it was 182/94), I also have Essential Thrombocyctosis (blood disoder too many white blood cells).  So I am somewhat high risk for surgery......but I do want these things gone, both of them since I stand a chance the cancer can show up in the other.  I feel like one surgery is better than one now and maybe one later. 

I am scared yes, plus any and all other emptions that seem to hit with no warning.  I cry at the drop of hat and then be well not so nice at all.

For support there is my partner and of course Teresa has been there and lostened she even started this thread. 

I hope Monday they can tell me when I will get my MRI and oh yes on Monday I get the 3 stitches out from the biopsy.

Thank you all who post here, I look forward to reading it all.

Shaesallah

SherriG

Thanks for the advice, I get the stitches out tomorrow......YAY, I think.  I have noticed the lump has enlarged some and I am very tender in the in the armpit area now.....I will be asking about that when I see the doc.

As for my emotions....well, I can say I acknowledge I have BC, and I am not doing the why me.  Anger, sadness, tired all the time that starts within minutes of getting out of bed, crying alot yes I do those.  To some degree I am dreading the next year or so with all this hurry up and wait and whatever else will happen.  I am waiting for for more bad news since if any good news comes in it will be a welcome comfort. 

Write more tomorrow if I can.

Shae

spar2

I think I cried for the first year, just could not help myself, when I would come on here and see another one diagnosed I cried, if someone became a stage IV I cried.  When I looked at  myself in the mirror I cried but I promise after you get a plan, get the action going it will get better. Don't try to hold anything in, if you feel like cryiing, screaming, stomping your feet do it.  Do whatever you need to do to feel better, to feel like you.  gentle hugs. sherry

DebeDawn

Hello ladies,

My BS has told me that I will need a modified radical mas as the ILC is about a 12cm mass and that I will have to have radiation as well. (the cancer cells have broken through the skin all around my nipple).  I asked him to perform this surgery on both breasts at the same but he said not unless the MRI shows the cancer has spread to my right breast, as recovery is too difficult.  He would perform another masectomy down the road.  I am 56 , 5'!" tall and wear a 36EE.  I want them both done at once...for worry, for balance, for no bra under a tshirt next summer.  From most posts I have read, a double mas. was performed.  Should I get a second opinion from another surgeon or demand that they do both? 

Also, he did not suggest reconstructive surgery.  Still being in a state of shock I forgot to ask why.  Is it because of the radiation?

Thanks Debe

nash

You can have DIEP or TRAM reconstruction done after radiation, b/c those techniques use your own tissue.

I don't see why a double mast would be harder to recover from than a single. I'd get a second opinion on that for sure.

Gitane

Debe, A second opinion might be best.  Oncologists don't like to delay chemotherapy by waiting too long for surgery to heal.  But a double mast. takes no longer to heal than a single, right?  If the time factor is that big of a concern the chemo could be done first, then mastectomies, then rads.  Of course, that's an opinion from a non-professional.  

I had chemo, mastectomy, two weeks later more chemo, then 3 months later the prophy mastectomy on the other side.  I didn't have rads although that decision was made after chemo and surgery.

PeggyDixon

Hi Debe. I know it is hard to think of waiting and I hope that whatever you decide you are happy with. In my case, I had mastectomy, chemo then rads and a year after ther first mastectomy I had the prophylactic one. It worked ok for me although I did find it a bit unbalanced in the interim. I had Ds!! To be honest though, I was in surgery so fast after diagnosis (a few days) that I didn't even have time to consider a double - and I knew nothing about it at the time. An opinion from another non-professional (as Gitane said too lol).....get rid of the tumor asap whatever else you do. Good luck Debe - are you having surgery in Toronto? I am in Newfoundland.

DebeDawn

Hi Peggy and Gitane,

The BS hasn't even mentioned chemo yet only surgery and rads.  I will be having my surgery in Barrie (about 90 km north of Toronto).  We have an excellent cancer unit here.

Seabee

Debe--It doesn't seem that you are being given very many options.  I agree that you should seek a second opinion, and press with questions if you don't get a clear rationale.

ann-idiot

Teresa - On the sent node biopsy issue, mine was done at the same time as my lumpectomy. My BS in one of the doctors who developed the sent node biopsy in an effort to spare patients of unnecessary node removal. He injected the dye (which I hear is the painful part) while I was under and tested the sent. node right then and there. I knew when I woke up I'd either have the top 2 layers of nodes or I'd have a drain. I wound up with the drain, but I much preferred having it done during the lump and not as a separate procedure. My ILC was considered 1cm going into surgery, afterward it was listed as multi focal, and the best guess they can offer as far as size is concerned is 2.6cm. Not sure if the tumor size was a factor in doing the sent node & lump as a combo procedure or if he does that with every patient. His name is Donald Lannin.

Gitane

Shae,  I notice you haven't been posting and just wanted to say I hope you are doing O.K.  Please let us know what's up and come to talk if you need to.  Hugs.  G.

Seabee

As for the injections for the SNB, I didn't find them any more painful than most other injections.  I'd compare them to a sweat bee sting. I told the technicians to try one before putting me under, and then OKd going ahead with the other three.

I think it's the injection sites right on the edge of the nipple that alarm people and make these injections seem more painful to them. But perhaps my point of view is skewed. In comparison to my infamous core needle biopsy, most injections now seem like trivial little pin pricks.

Kleenex

Ahhhh, another possible positive: things are more in perspective. A mere injection? No problemo. I've had a badly done core needly biopsy, so I can handle ANYTHING. So true.

Shaesallah

I have been writing my post on my head for weeks, still I think I will end up rattling on and on.  Please forgive me if I do.

First this will be rather long, I am sorry, but I feel I must actually start at the biginning and tell my 'story'.  I will try to not be too boring.

I developed the small lump on the under side of my left breast around 12/07.  At that time a very dear friend (Teresa) was also dx with LDC, she was able to get moving quickly with her treatment.  I never said anything to anyone I honestly felt like the lump would be a cyst.  I always knew in my heart and soul that that she was going to come thru everything with flying colors and be alright!   I finally told my partner about the lump and he kinda bugged me to see a doctor.  I have no insurance and had no idea that there could possibly be any help for me.  (I was and am still unemployeed)  Last Feb. '09 we came up wth alottle money and I was able to go to a local clinic for the lump and my high blood pressure , they treated my pressure isse but instead of even looking at the lump they referred me to anpther program.  I called this EDW and was able to get an appt with a doctor only to have that appt cancelled and remade for 2 weeks later.  I amde the appt and the doctor set up an appt for a mammogram, again that appt was cancelled and reset for 2 weeks later.  So n April 8th, I finally have the mamo done and the Radilolgist is the one who told me this is breast cancer.  And he notified the clinic and they immediately set me an appt with another clinic for a consultation.  That appt was for 10 days away maybe 2 weeks. I went to the appt.  After 2 hpours of waiting and seeing the resident and a nurse the doctor finally came to the exam room, I was not in a good mood by then and when she said "i understand you have a lump on your breast' I just pulled up my shirt and bra and showed her (yes it was quite a good size and looked like orange peel), her comment was follow me now.  So my consult turned into a Fine needle Biopsy right then, which she ended up using a scalpal as the lump is extremely hard. (all this was a Thursday April 23rd)   Friday evening the 24 at 5:31 p.m. the doctor called and confirmed I have ILC I was at Teresa's when the call came).  # days later on Monday another surgeon checked my biopsy site and we discussed some options. He ordered and MRI of my other breast. The following Monday I went back to get the stiitches out and saw yet another surgeon. This one went off the deep end telling me that I had to have surgery NOW there was no discussion of what type or surgery, he just kept hammering me to agree to surgery NOW.  He did remove the stitches and I discovered I was going to get the MRI as this Medicaid card will not cover it.  I went home and cried for 3 days thinking I had no say in my care.  I finall (after talking to Teresa) called the office for the the first surgeon (the one who did the biopsy) and was able to talk to her nurse, gave her the run down and all but begged to be a patient there.  The nurse called me back the next day with an appt for an oncologist for the following week.  The ocologist is great he ordered a bone scan and ct scan for the May 19th.  The day before these tests I received a call from the surgeon moving my appt up to the day after the scans YAY something was starting to go right. When I met with her she was able to tell me the bone scan nis clean, the ct does show a 7mm leison on my left lung not in a spot that can be biopsied but she was not concerned.  We went over all my options. I love this surgeon, she sits and talks to you and gives you all the info.  I have known I want these both gone I want no chance of having to do this again (since I have high blood pressure I felt 1 surgery is better than possible 2) and she agreed that I can have a Bi-lateral Mastecomy, the date is set for this Friday the 29th.  She will also put ion my chemo port.  I have also see the ocologist again and he says surgery first is a good idea then he wants an echo study of my heart before I see(I have had bypass suregery 7 yrs ago the the 24th of this month) on the 24th of June I see him and we set up my chemo .  I will have checmo for 4 months, 1 treatment every other week.  Adn then a good chance of radiation for 5 weeks withit being 1 treatment everyday.

Oh and I am to have a SNB the day the of Surgery.  I check in a 6 a.m. go to Nuclear Med and they will do the 4 injections arpound the nipple.  My surgeon is part of a team runnong a study on how to make the SNB less painful.  So the morning of surgery I have a cream that is in a plastic syringe and I all do is squirt the cream arpound the nipple.  I have a 50 50 chance that it has the numbing creaming in it.  they want to find put if the numbing cream actually helps with the injections being less painfull or not.  Let you know what happens there. Crossing my fingers it works!!!  the surgeon was not exact;y sure what time I will get into surgery, it could be as early as 10 a.m. or as late as 3 p.m.

Sorry this was so long but I wanted all to know what a roller coaster ride this has been so far.  Teresa has been so helpful with questions I should ask and all her info letting me know what I am up against.  She is an amazing friend, always has been.  I on the other hand tend to back off and stay in my own little world, not that I do not care about her or others as I do greatly.  My mother raised me to not go over to friends very often as  her 'quote' you will wear put your welcome her version was go visit once a year or so.  I know there have been many times I have let them down but they are still here>  So for me to maintain friendships has been hard.  My closest friends are Katt, Teresa and Lesa.  They are there I know that, they are amazing I love them dearly and I am so Thankful that God put them in my Path. 

Ok I am done rambling. I hope I did not bore everyone to sleep.

I appreciate any and all advice I read here and I have been reading even tho not posting.  I will work on posting more often and getting involved here. 

  

nash

Shaesallah, glad you found us, and welcome to the group. You're at the hardest part with all of this--the beginning, but it sounds like you are getting good care and are headed in the right direction. And glad to hear you have a good support system of friends. You will also get a lot of support here--the women on the boards are great.

Good luck with surgery on Friday, and let us know how it goes.

Shaesallah

Well. I put on the cream and went to the hospital last Friday the 29th.  I was preadmitted so I went to the 2nd floor and the nurse there had me get into the hospital gown and she updated my medical history and what meds I was taking.  Then the wating for the SNB.......finally at 8 a.m. they came and took me to Nuclear Medicine.  They allowed my partner (Skeet) to stay with me while they did the 4 injections.  The cream was removed from the area and the Doctor  did the injections.  I have a low tolerance for pain so the injections for me were shall I say *U&%$ )(&^* *&^%$$ )*(&^%  (&&^.  Moving on next I was taken to the pre op area, by the anesthiesologist (?) gave me 3 injections thru the IV and started my bed moving towards surgery, I was fast and safely asleep, I never even saw the operating room......I remember waking up in recovery afew times but not opening my eyes.  Later I remember being in my room and Skeet was there.  MY pain was thankfully controlled with meds thru the IV and then on Saturday I was started on the pills.......I felt like a truck had hit me and then came back and hit me again.   Pain was one thing, but looking down and seeing 'nothing' (I was 44 DDD) really made all this sink in more.  It took me til yesterday to actually look at myself in a mirror.  Last night I noticed I was severely red and so today I called the surgeron.....I go in and see about drain removal and findout if I am starting to get an infection.

I have no idea how many nodes the surgeon removed she told Skeet she scooped a bunch out.

Maybe when I am there today I can get all the info.

Prayers for all. 

Gitane

Shae,  

When I read your posts I can remember so well how hard this whole process is for us.  I felt the professionals didn't understand at all how much this hurts and what we need from them.  A little understanding and compassion would have gone a long way.  However, they are, after all, medical people, their medical care is what we need most.  

The whole experience is a series of major blows, physically and emotionally.  I'm glad you are here sharing your story with us.  We need to help one another through this.  You are getting the care you need now.  That is great.  

You will be getting information from the surgeon, pathologist, and oncologist.  Be sure they explain everything to you so that you understand it.  Don't be shy about asking them to explain or asking the same question more than once.  We all do that.  Also, if you have concerns, like your redness/infection, get right on the phone and get help.  Don't worry about being a "bother" to them;  there are aspects to your condition you can't understand and anything could be important.  Tell them what's happening with you so the important things get taken care of.  

The process is drawn out, at least it seemed that way to me.  The testing, reports, etc. take time.  Eventually, though, it comes together.  I'm glad you have a plan now, and support among your friends and from your partner.  It helps to have as much "normal" as you can get.  Take care of yourself, above all!  

Come back soon.  G.

DebeDawn

Good morning ladies,

Well I took your advice and got a second surgery opinion, (in Toronto) and the surgeon agreed with my surgeon in Barrie, and they both recommend only having a single mod. rad. mas. so that is the route I will be taking.

This has just been a whirlwind of doctors, hospitals and testing.  I was diagnosed on 8 May 09 and am going in tomorrow morning for surgery - one month exactly from dx to surgery.  They certainly do work quickly.  You don't really have time to sit and feel angry or sad only enough time to get all your tests done.

Other than having a (*$%& of a cold and cough I am feeling great. 

My family are being wonderful.. to the point my dh went and picked me up my favorite meal at the restaurant yesterday.. I LOVE liver and onions but the rest of the family hate not only the taste but the smell, but I thoroughly enjoyed my liver (they all ate outside so they didn't have to smell it).

My mother in law is bringing dinner tonight, and my best friend is taking the day off work and driving up here to be with my dh and I tomorrow.

I am so proud of my daughter who turned 21 on the 31st.  She organized her university friends as well as her long time friends and they entered a team for the Cancer Relay held here last Friday night and God bless them, they raised over three thousand dollars!! 

I know that I am in good care and that between my surgeon, our wonderful hospital, my family and friends (including my cyberfriends here) I will get through the next few days much easier.  My big concern right now is having to cough after the surgery OUCH OUCH OUCH.   In the grand scheme of things not a huge problem.

Wish me luck and will post again next week.

Debe

Shaesallah

Sorry for being so slow to post......

Well, my drains were removed 5 days after surgery.  I was red, swollen and very sore.  The red actualu extended up from the incision about 2 inches, I thought I had an infection....I was placed on a very strong antibiotic for 10 days.  When I returned to the surgeons office 7 days later it was more apparent the instead of infection I had skin and flesh dying (some very black areas).  So back again to the surgeon last week and I go again Monday the 22nd.  At this next visit the surgeon will determine if I need to go back to surgery to have the dead areas removed.  I also saw my Onco last Friday the 19th, and he has changed the paln for me.  I will be doing 4 to 6 Chemo treatments (4 minumum 6 preferred), and they will run 1 every 3rd week starting around July 15th to 17th, no radiation and then I will go on pills. 

The last 3 weeks since surgery (on the 29th of May) have been for me rough.  I I am still sleeping in my reliner as I can sleep more comforatably semi-sitting up there than in bed.  Riding in the car is not pleasant, but at least after a ride I am so tired napping is easy.  The weather here has become hot so going outside is not fun I try to stay hydrated since the heat seems to drain me.

I did find put that at surgery the doctor removed only 2 nodes and they were and have remaind clean with great margins.  And I am considered stage 2A . 

So now I am waiting to see if I need further surgery, and if I do it needs to get done so I can heal as much as possilbe before Chemo.

Shae 

Gitane

Shae,  Good to hear from you.  Negative nodes and the surgery is over...well except for a little repair work, possibly.  Good news.  You are making progress.  I remember how draining the surgery was, so take very good care of yourself! G.

Shaesallah

Hi Gita-

The surgery has been draining that is for sure.....even now 3 weeks later I feel so tired.  I know the weather being hot and some what humid does not help either (and I asked the surgeon about it, she said avoid the heat as much as possible and drink lots of water).  I am trying to take care......

I wonder how I will do with chemo and the hot, humid weather....I know lots of water, haha.  I know I will make it thru........but right now it seems like it will be forever before I will be thru all this.

Thankfull I have good air conditioning where  live.

Talk to you soon

Shae

Shaesallah

Just a quick note.  2 weeks ago a I received a copy of my Path Report that is based on my tissue from my bilat.  The report from the biopsy said I had ILC, thos report said I had IDC with ILC tendencies.  I saw my Surgeon today and yes this is what I have.  I don't knpw if I should be happy about this or not!  This Friday I see the onco and find put when I start Chemo.

 Shae