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Topic: Analysis Paralysis - how many opinions is enough?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 8, 2019 10:59AM

kitkit wrote:

Hello everyone!

My story from 2010: Pleomorphic LCIS. Lumpectomy followed by 6-7 years of exemestane). Followed as "high-risk breast cancer patient" with alternating mammos and MRIs every six months.

After years of normal results, last month my MRI showed malignant axillary nodes (2-3). They were not noticed in the last year thru mammo or MRI. After needle biopsy of node it came back as:"carcinoma with a diffuse lobular like architecture in tissue consistent with a lymph node."

Like many lobular cancers, there is not a clear mass in the left breast but perhaps an "area" where I will have another needle biopsy next week. I hope they find it.

Results from lymph: Estrogen Receptors: Positive (60%, 1+)

Progesterone Receptors: Negative (0)

Her2/Neu: Not amplified (1+)

Then i had bone scan and CT. CT showed "a few abnormally enlarged left axillary and right hilar lymph nodes." Bone scan showed "well-defined focus of uptake within the T6 vertebral body region."

Next week I am scheduled for PET scan. My MO, whom I like a lot, says he is "not terribly worried" about spine results or "right hilar lymph nodes".

I am a researcher and a planner.

I have met with a breast surgeon I really like, Maggie Dinomi. She says she will do an axillary dissection possibly with a lumpectomy depending upon whether anything is found in the left breast to take out. It would be followed by radiation/chemo as directed by my oncologist.

I am meeting Monday with the surgeon who did my original lumpectomy in 2010, Dr. Guiliano, who is now at Cedar-Sinai. He is a major researcher in the field, and very knowledgeable.

My friends/family say, "You've got to go to MD Anderson" for another opinion. I made reservations to go there for 5-7 days for a work-up. They seem to favor chemo first, before surgery, reading the literature they post online as well as the papers published by the doctors they've assigned me to.

I am wondering: Aren't two surgeon's opinions in Los Angeles enough? Plus an oncologist who is caring and interested? (He has called me nightly for the past two nights and spoken for 1/2 hour about why, for example, he thinks a PET scan would be a good idea now). I am worried about being pushed into a clinical study at MD Anderson that needs patients to do the chemo first . After all, they exist on grant money, and need to keep the studies full.

Can I ask all of you...would you just cancel the MD Anderson now - then go there as a last result if treatment here fails - or get a third workup done there? When is enough, enough?



kitkit
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Mar 8, 2019 01:01PM Runrcrb wrote:

i would cancel the MD Anderson. It's interesting to me that someone tells you that you MUST contact MDA. Why? You seem to be confident with the process you are using locally and I'm not reading from your account anything that is so unusual that only MDA could handle it. Why add the complexity and stress of out of town if you are confident in the care you will receive locally?


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Mar 8, 2019 01:28PM kitkit wrote:

Thank you for replying. My sentiment: if my treatment here is unsuccessful I can go to MD Anderson in six months or a year, and get their opinion what, if anything, to do next. I do not see a need for seven days at MD Anderson right now. It will be interesting to see if anyone else will write and make the case for the full MD Anderson workup before any treatment here.


kitkit
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Mar 8, 2019 02:34PM betterdazeahead wrote:

I am seen at MDA and am not in or been pushed into any studies nor did they push for chemo first at all. I have other friends who are here as well too and nothing has been pushed on them either unless a situation warranted chemo 1st.

Personally I am glad to be at MDA but I live near them, I had friends push me to get another opinion at Mayo Clinic which is also near me and I didn't give it a second thought. My team at MDA is amazing and I trust everything that is going on with my case and how they have dealt with me.

IMO If you are comfortable with your team where you are at currently there isn't a need to go elsewhere. I agree with runrcrb completely. 

Good luck to you kitkit - it sounds like you are in good hands right at home! 

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/31/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/14/2019 AC + T (Taxol)
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Mar 8, 2019 03:16PM kitkit wrote:

Thank you for responding! I feel like I'm ping-ponging between going and cancelling. From everything I've read, lobular carcinoma needs to be looked at very differently than ductal in terms of treatment. Do you feel like the doctors at MDA were giving you specific-tailored treatment for lobular that you might not have gotten elsewhere?

kitkit
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Mar 8, 2019 03:21PM Runrcrb wrote:

my initial biopsy revealed ductal; follow ups (MRI) revealed lobular. While my oncologist referred to lobular as “sneaky” i was still very comfortable pursuing treatment locally.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Mar 8, 2019 03:47PM - edited Mar 8, 2019 03:47PM by kitkit

This Post was deleted by kitkit.
kitkit
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Mar 8, 2019 03:49PM betterdazeahead wrote:

In my case I was told my case was a very complex case especially given that I am much younger then the average woman who has ILC. There was never any talk of anything besides it clearly being ILC and that I was put in about a 1-3% of cases. I had multiple tumors all looked identical to each other. I have a strong family history of BC but no one has any genes associated with it. 

I met my BS 1st and fell in love with her immediately. There was no choice my breast needed removed - I asked for prophylactic removal of the right breast because of ILC being "sneaky" she 100%  agreed that was the right thing to do. She wanted to wait on surgery so I had the best PS - who I met 2 days later and also fell in love with. She also immediately with me in the office called my MO (before I met her) to start me on tamoxifen since I had to wait longer then they hoped for because of the holidays and I needed 2 BS and the PS schedules to all work together. I was sent to my MO who was amazing and very concerned over my case and also my RO again same level of amazing both before my BMX. My MO at that point was already overly concerned from my biopsy report and did not want just our tumor board involved with my case but TX as well so that there were multiple sets of eyes on me.

After my BMX and we had more information they have moved quickly and I feel appropriately.  I haven't asked if the treatment I am getting is specifically tailored to ILC or more so to my case, I think I was too busy processing and learning about what was going to happen. I can ask when I am there next week and get back to you on that question.

All I can tell you is for me, I trust my team very much and I feel like I am in excellent hands. I wouldn't want to be elsewhere at this point. BUT that said I think feeling that way no matter where you are at is sooooo important, it doesn't matter if it is MDA but if it is where you have been seen and feel comfortable I feel there should be no doubt in your mind staying there is right for you....it doesn't matter how any friends or family feel as this isn't occurring to their body. We have to make the choice for ourselves and we know if it is right or wrong.

(((((HUGS))))))) ~Sophie

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/31/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/14/2019 AC + T (Taxol)
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Mar 8, 2019 04:32PM windingshores wrote:

I have been surprised to read about the lack of research on lobular (and some studies seem to contradict others).  There is a doc at Dana Farber named Metzer who is very knowledgeable, and I assume there would be someone at MDA.  But perhaps the docs you already have are expert in lobular.

I ended up with 4 opinions when first diagnosed. Long story. But I think it is good to keep going until you feel comfortable. If you feel comfortable, on the other hand, no need to keep going :)

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Mar 9, 2019 06:58AM dakrock wrote:

KitKit

If it were me I would hold off on the MD Anderson until you feel that is the last resort.   Sometimes they have us going from one doctor to another. My doctor wanted me to see an Endocrinologist and then a Gene specialist.   I feel I have enough good people looking at me... My primary care, My surgeon, my oncologist, my plastic surgeon and my dermatologist (I also developed a melanoma on my face).  I'm actually seeing my oncologist on Monday and getting my Zometa IV and that will be my last one of Zometa.  I am no longer going to take them and I am also telling my oncologist I am going off the Letrozole.  I am 73 and have always been healthy upbeat and very active.  Now I am a different person.  There is not a day that something on my body does not hurt.  I have no appetite, lost 15 lbs and cannot believe how tired I am all the time.    I'll take my chances and start trying to be me again.     Good luck with your decisions.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Mar 10, 2019 01:04PM kitkit wrote:

Thanks to all for your input. My decision today is to hold off on the MDAnderson. I am going to contact the University of Pittsburgh that seems to be a leader in lobular as well as the Lobular Cancer Alliance and see if I can get one more phone consult re the type of chemo that would work best on me.

I am having the surgery here in LA on April 4. I still have time for chemo research. I like the idea that my chemo regimen is being created and supervised by someone I trust in LA. If it needs to be changed I can see someone right away. That's what makes the most sense to me right now.

I'm sure we'll all be in touch soon!

kitkit

kitkit
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Mar 12, 2019 12:50PM dakrock wrote:

Well I saw my oncologist yesterday and told her I did not want to take the Letrozole anymore.  I was surprised that she really understood what I was saying.   She said all the AI drugs will do the same but they are the better ones to take.  She said stop the letrozole for 1 month.  After 1 month perhaps try Tamoxifen.   It will not affect my bones as bad as letrozole has.    I said what if I decide I don't want to do anything.   She said that is most definitely your choice and if you do that we can deal with things as they come up.   I'm thinking I am not going to even try the Tamoxifen.   I think they are starting to get how bad these AI drugs can make you feel.   If anyone has taken Tamoxifen could you let me know if you had any side affects?

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Mar 12, 2019 01:34PM betterdazeahead wrote:

dakrock - I took tamoxifen for only a month and was absolutely miserable! My MO said she had never seen someone so sick on it before. However, I was on it before they took the cancer out of my body and she believed that may have been the reason my SE were so severe. I took mine in the morning as I take another medication at night and couldn't switch. I have heard people say take it at night for less SE but in my case that wouldn't have made a difference. I was sick ALL day long and it was worse at night as I also got indigestion which only occurred at night. The nausea was like bad morning sickness and the vomiting was almost daily, it was very hard to function for me I think mainly because I never ended up with a solid nights sleep. BUT, like I said my MO said that my situation was rare and she doesn't see that happen very often - hopefully your SE will be nothing --- I do have another friend on it and she literally has had NO SE on tamoxifen at all Winking

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/31/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/14/2019 AC + T (Taxol)
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Mar 13, 2019 08:41AM dakrock wrote:

Betterdazeahead


Thanks so much for the heads up.   I am thinking I may not even try it.   I am so tired of being tired and not feeling well.  I am just waiting for the Letrozole to leave my body.  I have  1 month to think about it.   Thanks for your input.  I really appreciate it 

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Mar 13, 2019 08:55AM wallycat wrote:

When you are comfortable with your decision (and we all base it on different things...info we get, travel/distance, time off/work, money/insurance coverage), then it is enough.

As an aside, a lot of gals think this is the "big" and "final" decision but it just doesn't work that way. Recurrences happen with the best of decisions and NED sticks around with some of the worst decisions. Cancer is a crapshoot. The goal is to feel as confidant as we can with the decisions we make and then try to go out and live full lives...long lives.

Good luck with your decisions.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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