Team ILC Warriors
Comments
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Joelle, my doc told me to delay recon for, among others, that reason. However, if you get an annual CT, I imagine they should catch any creepy-crawlies.
By the way, I don't think lobular is particularly prone to recurring on the chest wall. As far as I understand, chest wall recurrence has more to do with stage etc.
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ILC DOES not create lumps, any cancer can recur in chest wall, as its so close
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I think reoccurrence on chest wall would come down to poor margins
2mm minimum is considered good. Personally I would rather see 10+mm
Weird how 10mm would be a small tumour and yet a large margin0 -
This is depressing me now as my margins were only 1mm and 0.7.....but i did have radiotherapy afterwards......
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Lily, I don't even know my margins. I do know that both docs were VERY insistent on the rads, lol. It is on my list of questions for my next visit, but it is what it is, as the saying goes.
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Would our margins be on our pathology report? i will have to try and dig that out and look.
I am just curious as I follow Ann Fonfa from AnnieAppleseed.com and she had ILC, had recurrance in chest wall repeatedly before doing Wong's herbs and she credits him for keep them away after that....so, I do feel relieved that I am on his herbs...just always concerned. She did NOT have recon or implants, just masectomy so hers are easy to spot and mine would not.
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5 Margins were on my path report
Superior, lateral, inferior, medial and deep ( most important for mastectomy) all listed under macroscopic section of report
With lumpectomy there would be an anterior margin too .0 -
Joelle, I think Fonfa's recurrences had more to do with her treatment choices than with the type of cancer.
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Momine, I don't think recurrances really had much to do with treatment choices as many women who do get chemo/rads still do get recurrances at times....
Great thing is she never did chemo/rads and has survived 22 years w/out recurrance partly due to Wong's herbs...But, that's beside the point as I was just concerned on how to detect chest wall recurrances.
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Hi
Nocompromise- Onco says between 99-100% currently, hormones are super high. He thinks i wouldnt start menpause for another 10 years or so, but that is his educated guess. I have all symptoms of having high hormones, including the BC, migraines, thyroid issues. The list goes on, crazy i never made the connection before all of this. Thank you for your response.
Shari- Thanks for giving me hope. I am not taking the tamoxifen, I tried and it didnt agree with me. If I was going to take it I wouldnt get the ovaries out. PTSD, no question I have it. Went for my pre-op today lost my mind as soon as I walked into that dang place!
Momine- thank you for your honesty I hope I am as fortunate as you were. I think I can do 3 months!
Lily- You sound do good, you are dealing with the PTSD very well. I love it when you are cheery. How have you been? How are things with your son? I hope you had a good summer, I heard it was a hot one for you there. XO
Joellelee- Hi, chest wall? damn another thing to worry about? I get my check up in Oct. 3D mammogram I am going to be so nervous but also eager for good news. I do agree Dr Wong is helping people, its all a risk either way we go. Decisions are hard and they can be life or death literally. My gut wouldnt let me take the tamoxifen I had to go with my gut. I know I will be offered a AI and will cross that bridge when it arrives.
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Hi ladies. I just wanted to tell you that I got cellulitis in my right breast and was admitted into hospital Saturday. We scheduled to remove the breast Friday but then my ps said for us to delay it and give this antibiotic zyvox time to work cause it was getting rid of redness. They let me come home yesterday and I have been in bed ever since. I still feel so sick. Im in alot of pain. I never knew that cellulitis could be so serious. Anyway I also am concerned about how to tell if I get a recurrence. With these implants and mastectomy I dont think they do any test specifically for th breast. They do petscans and ct's but the ct's are for the whole chest and not for the breast.
Lily, I know ILC does not normally form lumps or masses but in my case the indian file like pattern had grown 1on top of the other and I found it by feeling a lump. The radiologist told me that usually by the time you feel it then its big. I was just blessed to feel it and it hurt which brought my attention to it. I ended up with 3 separate tumors spread all over the anterior part of breast which was about 6cm but my biggest tumor was 2.9 cm. Anyway my last surgery was May 31 of this year and my ps was blown away that I got cellulitis this long after surgery. I staryed hurting Friday and it jumped on me quick. I was deathly ill by that night. I just wanted to warn everybody to pay attention if your breast gets hot or you see redness or it starts hurting. I hurt all the time anyway so I didnr pay attention.
Healing hugs to all0 -
Melmcbee, I am not sure if you remember me or not, I first joined this thread when I got dx in May, our Dx and our paths are very similar except you are almost exactly 1yr ahead of me. I have to wait to do Reno until my chemo and rads are over sometime next spring. I am sorry to hear about your cellulitis, that is a very scary and serious thing, I will keep you in ,y thoughts and prayers for healing and comfort. I hope you have a relaxing weekend.
Shary🍂0 -
melmcbee - healing hugs to you too. what an ordeal! so glad you are home now and i hope you can find a way to decompress and relax. sending you good vibes.
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Thank you ladies. Iam trying to just rest be c ause I feel so bad like I have the flu. Lol. Healing hugs to all. Gavinsgrandma, good luck o.yourchemo and rads. Just keeping trucking along. It willbe over soon enough.
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Joellelee,
I am by far am expert, but I would be happy to share my experience. I have been getting regular mammos for 5 years (I am 38now with history) my 2012 mammo came out clean saw nothing. So I decided I would get breast implants under my muscle. Low and behold my 2013 mammo showed a flat mass (2.8 cm ILC)pushing on my implant. That's why they decided to biopsy. That's how they found it. So, now I have had a bilateral MX and immediate reconstruction.Both of my surgeons have said that it will be easy to spot a mass if it grows because I have no breast tissue between my skin and muscle. Basically the implant under my muscle pushes everything to the surface. Some may have other viewpoints and better insight. This is just how it was explained to me. I hope this helps!
Miss all of you!!! I have been depressed during chemo and haven't felt like positive self... Which I see many of us experience, so I have stayed off the boards for a while. Like you said Lemon all of the feelings come rushing back and it's been hard to deal with. I never took meds before now except Tylenol on occasion. Even after surgeries I can't take pain meds because they make me so sick. However after much consideration and a few talks with friends who have been where we are, I decided I would try Paxil. It took a few weeks to kick in but it has made a considerable difference in my depression. My doctor said it won't be forever, just now. Also I think after being of A/C for 8 weeks and doing just dose dense taxol has made a difference too. I am not advocating this is the only way. I just want you to know that paxil& talking with support have helped me stop suffering. I also rely heavily on my faith, but God made doctors & friends for a reason too
Good luck with your surgery in the 19th if you decide to do it.
I am right with you on that decision-unsure but don't have to decide until my rads are finished.
To all of the new, old timers, and in between like me.... I am hurt for each of us having to go through this- but thankful for each of you and this resource. Otherwise a lot of us would go through this alone. You all are valuable human beings with real feelings that only truly those of us who have been there can understand. Stay strong an reach out when you need to. Everyone here is so kind and wonderful. It makes each of us feel good to help someone.
Best wishes and hope and love to all!
Julie0 -
Hugs to those of you still recovering or getting chemo...
Ahem. ILC most certainly does form lumps. I found a lump about the size of a green pea in the upper left quadrant of my right breast through a regular BSE--and sure enough, ILC it was. 2 c. not found on any previous mammos.
Unfortunately we and any other cancer survivor can have recurrences in any part of our bodies. All we can do is monitor what can be monitored, apply lifestyle changes (that drinking thing for some, e.g.) and hope for the best. It's all such a crap shoot; all we can do is try to beat it back and strengthen ourselves through food, exercise, sometimes anti-hormonals, and sometimes supplements and other things, so that our bodies are more easily able to fight back.
Claire
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During a BSE, I also felt a pea-sized lump that turned out to be ILC. My MO said it had probably been growing for five to seven years (during which time I had "normal" annual mammograms).
Even with a diagnostic mammo (to investigate what I had felt), the mass didn't really reveal itself -- even on a 3D mammogram. It was architectural distortion that raised a flag to the radiologist, so an MRI was ordered. That scan definitively showed the 1.8 cm mass.
I have my first mammo since dx and tx on November 1st. It will be a 3D scan. Then I will have an MRI six months later. I'm certainly nervous but still take a lot of stock in BSE.0 -
In Feb 2012 I found a golfballl size lump. It literally showed up over night. Called my doctor's office and she was out so saw a partner the next day. Went for mammo and US. Both were "normal" dense tissue. Saw my doc for annual 6 weeks later. She reviewed radiology and felt the mass. Said it just felt like dense tissue.. 3 docs and the radiology all said Follow up in a year.
When I went back this year everything was a whirlwind and a rush was put on path. My what I difference a year makes! They now say it has probably been growing 8-10 years because of the size and node involvement. All I can think about that is I fed 1-2 of my 4 kids during that time from a milk producing lobe that was also growing cancer.
I started getting mammo at 35 (47 now) and have NO family history. I have had many call backs over the years for "clearer" pics. Also had an US or two. Now I wonder?0 -
I apologize if it sounded as if I was saying that ILC didn't cause lumps. I am not great with words, never meant to suggest otherwise.
Great thoughts and much love to you all!0 -
4sewwhat, I had a very similar experience!!! I went to my well-woman doc when I first found the lump. She said "normal breast tissue" and said to monitor it. I didn't feel right about that and went back two weeks later. She said "normal breast tissue", again, but offered a mammo and u.s. to "relieve my mind". My mind wasn't exactly relieved when I went for the mammo (did not show anything even when I showed the rad tech where it was, and she felt it too!) but the u.s. showed an abnormality. 1 week later I was in a surgeon's office, another week, a lumpectomy/excisional biopsy, and before I was fully awake from the anesthesia I found out about my dx: 2 c. 6/11 nodes.
Remember, everyone: the first report is often suspect. Get second opinions for all news if you can, good and bad. Proactive will keep you alive.
Claire
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Yeah, I still kick myself in the butt for not being more forceful last year, but I had been with these docs almost 20 years, 4 lost pregnancies, fertility treatment and 4 babies! I also did all we are supposed to and guess I was too trusting. But that's just me, then I got busy, it was the holidays, I broke my ankle, yada, yada. shame on me though.
I can tell you the monster they created! I have left no stone unturned and ask a million questions. Have even typed up and faxed, waited for answers and waited until I was satisfied with them before I would let them touch me!
Going for a prophy left MX tomorrow because I told them to leave NO breeding ground. I am only doing all of this once since I got the full spa treatment right out the gate! I didn't do both at once because I was barely off crutches!
Have a great week everyone!
Lynne0 -
My DH is retired military. He's the one who always claims the first report is often suspect. Since something just didn't feel "quite right" if you know what I mean, I pushed for more testing. I SO wanted to believe my GP that it was just normal breast tissue...and tried hard for a couple of weeks. Something wouldn't let me let it go.
She'd been my GP for 15 years, too...but I don't blame her. I'm grateful I found it (had my boobs been bigger --I was a miniscule A cup--probably not) and that I listened to my intuition.
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4seewhat, good luck on your surgery tomorrow, I will keep you in my thoughts and prayers. I initially did BLM because I did not want to be a moving target for ILC to show up on my right side and I am so glad I did.
Hi Claire, I hope all is well with you.
Melmcbee, I hope you are feeling better, my thoughts and prayers are with you as well for healing and health and thank you I will keep trucking along.
Shary🍂0 -
Thanks Shary for the good thoughts! I am with you on the BMX I just didn't do both at once because I was barely off crutches for a dislocated, broken in 8 places, plated and pinned back together left ankle! I didn't think I could have both arms and my ankle torn up at once! I was still hanging on too tight on stairs and getting on and off the throne! Unfortunately the ankle was doing great until chemo fried it. Foot doc says bones are in great shape and I will know in two years if nerve damage is permanent :0( Really???
Melmcbee--glad to see you are on the mend! Hope it is all uphill from here!0 -
4sewwhat, it is a wonder you could even function with any additional surgery, that is a lot at one time😛what did the chemo do to your ankle? Is it basically never damage around your ankle?
I hope everyone is having a great day😄
Shary🍂0 -
GavinsGrandma--The first night of chemo my big toe started to twitch! My ankle was already tingly from the nerves regenerating from surgery on 1/29. I started chemo 6/14 and they say nerves rebuild 1 inch a month. I think that's why my PS said my chest could be numb for 9 months.
It is basically nerve issues from the Taxotere and also swelling/fluid retention from chemo in general. It kind of hit my arm where the node disection was still recovering too. Like the weak zebra the lion spots! My ankle is just really stiff and tingly but not numb so I am taking that as a good sign. Plus it happened first treatment and didn't get progressivly worse. I iced the crap out of my feet and extra on my ankle too so I think that helped. So now back to PT. Ugh!! same 6 weeks as rads too! Plus parking, copay, yada yada. You all know the drill! This too shall pass!!
Have a great night!
Lynne
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Another opinion from a different oncologist at same center. He said I am not having chemo due to ILC not being very responsive.
I will post a new question: has anyone else with ILC NOT received chemo?0 -
I did SO much research about ILC and chemo. I had study after study printed and took them with me! My onc said it wouldn't respond much to make a difference before surgery so I did surgery first. 3 different oncologist told me that ILC doesn't respond as much to chemo. Especially if it is slow growing because chemo attacks fast dividing cells. I did it because of my 22 node surprise from surgery. My oncotype was only 13 so 9% recurrence rate. 22 nodes gave me an 85% recurrance rate without chemo so I went with it but did CT not ACT because some studies out of UCLA and other places say that highly estrogen sensitive does not respond as well to anthracyclines so I didn't choose that.
HollyBoo. Have you had surgery or did they run and oncotype yet? Also a lot of time docs at the same center or even the same hospital won't cross each other'a opinions. I saw docs at 4 different metro atlanta hospitals and they still all knew each other! One doc said mine was the most interesting she had ever seen because of the Ki-67 being so low, the low oncotype, but yet 22 nodes. I don't want to be interesting!
Good Luck! I will be interested to see what experience others had with this!
Lynne
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I also declined everything except surgery and I had 7 positive nodes! But, cancer can seed regardless of node status. I'm now on herbal tamoxifen and hormones are balanced.
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I was just told that the CT scan shows thickening of the stomach wall. I'am scheduled for an endoscopy on Friday. I am obviously very scared, Did anybody here went through this?
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