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carold164
@carold164

Posts: 4
Joined: May 12, 2016

Diagnosed with stage 3a ILC

Posted by @carold164, May 11, 2016

I was diagnosed 10 months ago with stage 3a ILC followed by a bilateral mastectomy. I am Interested in sharing information with others…..

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Hi @carold164.
I’m calling in the welcoming committee. @fundytide @grandma41 @martid @luladavis @cautiousoptimism @tinalove will you join me in saying “hi” to Carol.

Carol, what treatment did you have after surgery? Will you have reconstruction?

Hi Carol! I was diagnosed in may 2015 with stage2 ILC. I was able to have a lumpectomy with radiation. You need to have confidence in your care team to help put your mind at ease. Take advantage of the support groups. Live each day!

@colleenyoung

Hi @carold164.
I’m calling in the welcoming committee. @fundytide @grandma41 @martid @luladavis @cautiousoptimism @tinalove will you join me in saying “hi” to Carol.

Carol, what treatment did you have after surgery? Will you have reconstruction?

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No reconstruction for now. Treatment, no chemo, Oncotype DX was rated low for reoccurence on estrogen + cancers in both breasts. 33 radiation treatments followed by Tamoxifin for ten years. That is where I am at this point….Thanks for responding.

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@cautiousoptimism

Hi Carol! I was diagnosed in may 2015 with stage2 ILC. I was able to have a lumpectomy with radiation. You need to have confidence in your care team to help put your mind at ease. Take advantage of the support groups. Live each day!

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I do not feel very confident in my “team”. Nor do I see them that way. Probably very competent but not much more than that …a surgeon I last saw six weeks after surgery, radiation oncologist who is very business like but I was not comfortable with him. My oncologist is nice enough but here they just seem to wait to see if cancer comes back somewhere. No testing is done apparently…..PET etc. Thank you for allowing me to vent.

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Hi Carol. Sorry you are having to deal with this. I was diagnosed with BC in 2012 and am now dealing with a 2nd primary which, unfortunately, was found at Stage 4. I was HER2+ – left mast. no recon; did heavy duty chemo + Herceptin for one year. I had no radiation.

I think it is fairly normal for them to go lightly with the scans, etc. I had one because I moved to a new state and new onc. wanted to see everything. After that, once treatment ended, it was 3 month check ups with blood tests (which many do not do, as I understand) & mammogram on remaining breast yearly. My onc. tells me that most recurring or new cancers are found during exams. I have learned (the hard way) that it is critical to pay close attention to how you feel and do not ever disregard any symptoms. Fortunately, my blood work DID show something which caused further checking. As cancer patients, we have to really be our own advocates; sometimes we feel something is wrong before any symptoms actually appear. I am very fortunate that I have a great oncologist whom I trust totally. I have also been referred to a research hospital that works with my regular oncologist.

Because you will be on the follow up meds for so long, you might consider doing some research to see if there is another cancer center in your area where you would feel more comfortable. Because it is so very important to be able to talk to your oncologist and feel that you are being “heard”, I think it is reasonable to want one whom you have some rapport with. Changing doctors is a big deal, and stressful, butt you will be working with this person for a very long time. I would probably do the research and a lot of soul searching, maybe a consultation or two – or talking to other patients through a local BC group – and then make the decision whether to change or stay put.

@martid

Hi Carol. Sorry you are having to deal with this. I was diagnosed with BC in 2012 and am now dealing with a 2nd primary which, unfortunately, was found at Stage 4. I was HER2+ – left mast. no recon; did heavy duty chemo + Herceptin for one year. I had no radiation.

I think it is fairly normal for them to go lightly with the scans, etc. I had one because I moved to a new state and new onc. wanted to see everything. After that, once treatment ended, it was 3 month check ups with blood tests (which many do not do, as I understand) & mammogram on remaining breast yearly. My onc. tells me that most recurring or new cancers are found during exams. I have learned (the hard way) that it is critical to pay close attention to how you feel and do not ever disregard any symptoms. Fortunately, my blood work DID show something which caused further checking. As cancer patients, we have to really be our own advocates; sometimes we feel something is wrong before any symptoms actually appear. I am very fortunate that I have a great oncologist whom I trust totally. I have also been referred to a research hospital that works with my regular oncologist.

Because you will be on the follow up meds for so long, you might consider doing some research to see if there is another cancer center in your area where you would feel more comfortable. Because it is so very important to be able to talk to your oncologist and feel that you are being “heard”, I think it is reasonable to want one whom you have some rapport with. Changing doctors is a big deal, and stressful, butt you will be working with this person for a very long time. I would probably do the research and a lot of soul searching, maybe a consultation or two – or talking to other patients through a local BC group – and then make the decision whether to change or stay put.

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Hi Carol…I was diagnosed Oct./ 14 triple negative grade 3 lt Breast…had lumpectomy,chemo,radiation…am 1 yr post radiation …acute fatigue still,neuropathy in fingers from Taxotere chemo but overall,am ok…terrible itchy rash on chest and back from radiation that finally is getting better..no rash..just itchy.

Sorry you don’t feel a good connection to your oncology team…wonder what follow up protocol there is at your clinic….what your expectations were and if you asked enough questions to get the answers that would make you feel confident.

I am a nurse and found that I didn’t know what to ask until the neuropathy and rash showed up..guess everyone is different and they don’t want to overwhelm us with all the ” maybes” ….( I was a public health nurse with limited contact with Breast cancer patients)

Most clinics follow up every 3 months for the first 2 years,every 6 months for 2 yrs and annually the 5 th and subsequent years. In between,if you have any symptoms at all,like maybe sore ribs,lumps of any size in Breast or under arm,neck or collar bone area,contact the oncologist office…most places have an oncology nurse you can talk to..they can allay your anxiety and will get you in to see the oncologist fast if necessary..
…… 2 weeks before each follow up oncologist visit,I get blood work done and a mammogram after 6 mo.
Martid said they go lightly with scans etc and that is true….unless you have a symptom that needs checking out. I had a sore rib …last month…could have been metastices so had bone scan..node showed up,so had CT scan ,mammogram and oncology blood panel all within 2 weeks…..nothing serious so am back to every 3 months.
I only saw my surgeon once..after the lumpectomy. ….standard procedure I think as you then get turned over to the radiation and medical oncologist.

This is long..sorry…but I hope you can get comfortable with your team…communication is everything…wonder if you write down your questions …most oncologists will answer all of them …it is true that you have to be your own advocate,so never hesitate to ask ..there is no such thing as a stupid question!
Good luck with everything and I hope you can get a good follow up schedule so you feel more secure as you go through your treatment…sending positive vibes.

My half sister diagnosed with cancer. Infiltrative Lobular Carcinoma in situ Grade II, Stage IIIc (T3, N3, Mx) Estrogen %75 Histoscore = (+3). Progesterone Receptors %95. HER2Negative, Ki67 %20. Primary tumors 6.5 cm. 11 out of 11 lymph nodes showed metastatic with multifocal extra capsular extension. Her right breast removed.
thanks

Hi @gulzar. I moved your message to this discussion so you can talk with @cautiousoptimism and @carold164, both of whom have Infiltrative Lobular Carcinoma (ILC). I hope @fundytide and @martid will also join in.

Getting a pathology report can be overwhelming and confusing. I really like this detailed, yet plain language, explanation from the American Cancer Society called: Understanding Your Pathology Report: Breast Cancer http://www.cancer.org/treatment/understandingyourdiagnosis/understandingyourpathologyreport/breastpathology/breast-cancer-pathology It breaks it down element by element.
This page from Cancer.net explains staging very clearly too http://www.cancer.net/cancer-types/breast-cancer/stages

This pathology report gives her cancer care team a very clear picture of her particular type of cancer and how far it has spread. Knowing this information helps the team recommend the most effective treatments.
What questions does you sister have? What treatments will she be getting?

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