Frustrated with Oncologist

Leslie13 · November 2015

I'm not the only one here who's been frustrated because their Oncologist didn't give much creedance to the differences between Ductal and Lobular cancer when coming up with a treatment plan.

My tumors came back Grade 1 on my path report. The cancer is gone, except for any micromets that have likely been floating around awhile. I had micromets in 4 lymph nodes vs 3. I have chronic pain and neuropathy from back and hip replacement surgery. Not to mention fatigue, brain fog, and achiness from Femara and surgery recovery. I need another hip replacement soon. Taking my immune system down even lower isn't an option.

However I remain 95% sensitive to Estrogen. I'd take a stronger hormone therapy, but she's not offering that.

Now, since I don't want chemo, she wants me to consider radiation. Isn't that contraindicated when I'm in the middle of reconstruction? And why do whole breast radiation on a mastectomy? My lymph nodes are gone too. She's nice, but I'm ready to fire her because of her lack of understanding of Lobular cancer. How did you handle similar circumstances?

inks · November 2015

I did not have lobular cancer but I am not aware that there would be any stronger hormonal treatment than aromatase inhibitors which Femara is one of for early stage breast cancer. And while radiation after tissue expander or implant reconstruction is not ideal it is still often done. Perhaps the radiation recommendation is because of your tumor size? If tumor is 3cm and up then radiation is recommended even after mastectomy. The side effects from Femara may get better after awhile and if they are unbearable you can take Tamoxifen or try a different AI. So sorry you are dealing with breast cancer on top of other health concerns.

614 · November 2015

Dear Leslie:

I would go for a second opinion so that you feel that your questions are being answered to your satisfaction. You need to feel confident that your MO knows how to treat Lobular Carcinoma. I do not know the answers to your questions but I am offering you positive thoughts, prayers, and hugs. Good luck.

Anonymous · November 2015

Hi,

1) I'm surprised that you are being offered rads when you are under recon--I would also be surprised at a PS and Rad oncologist that would agree to that.

2) for low grade lobular, it seems that femara is the gold standard for post-menopausal treatment.

3) as for chemo, I wanted it, not because it was supposed to treat ILC specifically, but my MO and I agreed that we wanted to throw everything at my ILC the first time around. If there was a 5% chance that chemo might kill 1 cell that could eventually cause trouble, I wanted that chance and so I took it.

4) Second opinion: get one and voice your concerns to the second oncologist as you did here. Go to all appts with your list of questions and don't let your (or any) MO leave until you've written down their answers. Unfortunately there isn't a lot of difference in tx out there for ILC vs. IDC, but because we know that ILC tends to be multi-focal (hence, my BMX to get rid of all breast tissue I could that could go bad in the future) and that ILC has a tendency to return later (10 years vs. 5 years, compared to IDC) our treatment choices are key in protecting ourselves.

Let us know how it goes.

Claire in AZ

Leslie13 · December 2015

I'm so happy, I found a new breast cancer Oncologist. She well understands the difference between Lobular and Ductal cancer and the need for different treatment.

I recently learned more about the subtypes of Lobular cancer. There's 3 and they have different genetic mutations: 1) Low proliferation rate; 2) High proliferation rate and 3) Immune system problems.

And there's subtypes within these categories. It's all about which genes have mutated. We with Lobular cancer need to be more insistent on getting the right therapies and diagnostics for our cancer. It took interviewing a few Onco's before one could give me the answers I needed to hear.

Meow13 · December 2015

I had both types Idc and ilc what treatment should I have?

Anonymous · December 2015

Meow13, you need to work with your MO on that, since treatment is designed from much more than just the type/s you have. It depends on tumor size, grade, nodes, pathology, etc.

wallycat · December 2015

If you have had a mastectomy, then rads recommendations are based on size of tumor...as someone else posted. I opted for mastectomy to avoid rads and was able to do that. New studies show that even mastectomy does not eliminate rads, which at the time of my decision, I was unaware of (and clearly so were my oncologists).

Rads recommendations are based on survival rather than "cosmetic" outcomes. If your onco thinks rads will keep you alive, she will care less whether the reconstruction is successful or not.

I still scratch my head when I hear about the various grading systems...some paths won't grade ILC, some grade high and have no lymph node involvement (even with a large tumor) and some have low grades with lymph node involvement, even with small tumors.

There are subsets of ILC, but I am not aware of any testing on the specifics of each ILC tumor for diagnosis. Perhaps larger cities are doing them now.

Best to you.

Leslie13 · December 2015

Hi Wallycat,

It's frustrating when making treatment decisions about Lobular Cancer. Not enough is really known about it. All my cancerous tissue was Grade 1 in my path report. My Oncotype is 15. I don't doubt there's some cancer floating around, but Lobular tends to travel around the body. Systemic Endocrine therapy shows a lot of promise for killing the rouge cancer cells. Radiation isn't considered very effective because of the erratic growth patterns

I don't have confidence in my current Oncologist and am getting a second opinion next week. I expect to receive some chemo, but more targeted treatment for Lobular cancer. I've been a demanding patient, but the Dr's work for me. Like many, I've done tons of research, so I've been able to guide my treatment. When you've had 3 botched surgeries, and loads of questionable medication recommendations, you learn to be informed. Dr's are very busy, and some are plain lazy, or just may not have the skill set to perform the procedures you want, so they discourage you from trying something more cutting edge. And the fact is that many Oncologists don't know enough about the differences between Ductal and Lobular cancer.

wallycat · December 2015

Good for you on getting a second opinion! I fired my first onco too :-)

I'm trying not to think about "rogue" cells. Many people "without" cancer could have that and I'm trying not to let it define me.

We make the best decisions we can with the information that is available at the time. I"m sure your second opinion will prove invaluable. Post back and let us know how things went!!

Leslie13 · December 2015

Wallycat,

I think it's well established that the body produces "odd" cells all the time that it catches and kills. I developed cancer after an extended high stress time. I had many of the risk factors, but it took a boatload of stress to initiate it.

So I'm working on keeping my stress as low as possible, and improving my diet. Nathropathic Dr. said I need more protein. I don't love meat, and quit all the soy I was using so it's a challenge. To be honest, I don't like eating fish out of the Pacific since Fukishima. I'm in Portland and our coasts are pretty dead. I use Fish Oil from the Nordic. But stats show 1:3 people in the UK get cancer, so what food source is really safe?

As you pointed out, we do the best we can and don't worry. I'll let you know what the new MO says

Leslie13 · December 2015

Just a quick note to say I met with my second Oncologist and she agreed with no standard chemo after having a BMX and Femara all along. Much of her decision was based on my low Oncotype (15) score, and the fact I only had micromets in the lymph nodes. If the cancer comes back, I'll use stronger endocrine therapy. She did state that Standard Chemo isn't as effective for Lobular, but that using T+C is sometimes called for. She doesn't like using Adrimyicin because of all the side effects when benefit is limited.

I think there's some exciting research on Lobular cancer (see John Smith's research). If you're pre-surgical, there's a couple of clinical trials that you should consider. One would be the Femara or other AI and Faslodex. Wish I'd been on that one. She also told me I'm now in remission Wa Hoo

Momine · December 2015

Leslie, what is a "stronger endocrine therapy"?

Leslie13 · December 2015

Sorry for my belated reply. I haven't been on much with the Holidays.

Faslodex is one example. It's given by injection to women who have recurrences of Er+ cancer. There's a few others they use if you go to stage IV

Trvler · January 2016

I had AC+T, a BMX along with DIEP immediate reconstruction and then rads to the entire breast. I was also somewhat frustrated by the reaction I received from the first two BS's I met with regard to ILC vs IDC. The original guy basically told me I shouldn't worry my pretty little head and the second one said ALL BC starts as IDC. I didn't like those answers. The ILC was never mentioned by my MO and she is also now fired.

stellamaris · January 2016

Leslie13, can you point me in the direction of more info on the subtypes of Lobular cancer? The third caught my eye as I have an autoimmune disease (Rheumatoid Arthritis), and wonder if the meds I take for that will affect my chances of recurrence.

614 · January 2016

Dear StellaMaris:

Is your Rheumatoid Arthritis under control? My boyfriend was recently diagnosed with R.A., with Myo Fasciitis which is like Fibromyalgia, and with severe Neuropathy. Nothing is working for him yet. It has been almost 6 months.

I was diagnosed with pleomorphic ILC and bifocal pleomorphic LCIS. Pleomorhic is one subtype. I don't remember the other subtypes.

Your doctor will know whether you have any subtypes. Please ask.

Good luck with your upcoming surgery. You have really been "put through the wringer". I wish you the best.

Woodylb · January 2016

Leslie,

I am sorry you are and caught between right or wrong. ILC being the second mist common cancer is not very well understood. They just started now to try and understand. Cancer being what it is not such a friendly disease is full of types, subtypes and subtypes whithin the subtypes. It is almost like prints. We may have the same type of cancer , same stage same everything , bit our cancer is not the same nor are our bodies , therefore we each respond differently to treatments.

Initially they treated IDC and ILC alike now there a tiny very tiny shift in taking a different approach with ILC. however the outcome is almost the same between IDC and ILC with ILC doing mch worst towards the end.

I benefitted for three years from comvined chemo ACT and femara treatment. Eventhough i was pretty advanced when diagnosed. I even had micromets but they were all metastatic and i had radiation after that. Taxane seems to work best on my ILC. since my cancer changes status one of my oncs said that i probably have IDC in my cancer which mutated to ILC. my other onc and a genomic report says otherwise.

Faslodex is a good anti hormonal however id you use it now and gd forbids your cancer returns and is more agressive you would have lost an option. Affinitor and Aromasin Is another one.

What i am trying to say is that there is no right or wrong with this disease. The only thing which will help is an established trust between you and your treating team. All oncologists will not worry about the cosmetic side of your cancer, they will worry more about trying to kill it indeffinitely so it does not return. Radiation for example is one excellent option.

If you are not comfortable or at ease with your current onc than i would advise to look for another one , but not one who tells what you wish to hear , but one who exlpains exactly how cancer is and what it intails.

I wish you inspration and stability between you and your oncs so you get to a place where you feel comfortable but also safe from the beast or as safe as you could be.

Research is good to ask about new trials and stuff but is not good when you digg deep in it. You will get lost in a labyrinth of info which will not mean much to you if you are not a doctor and you will get totally lost.

I hope you do not take offense in all this but i am speaking with my humble experience and knowledge.

Wishing welness and peace of mind.

Leslie13 · January 2016

Thanks for responding Woodylb,

I liked my last MO and plan to keep her. After reviewing all my options, I'm done with everything except Femara, and wellness. HRT was clearly the culprit in my Cancer, as I'd been on it at medium doses for 10 years. One year we upped the Estrogen because of concerns about bone health, and it was next to the highest dose. That was 3 years before the cancer. Once I started Femara, one 1cm tumor disappeared, another was downsized to .4cm, and the largest held steady at 3cm (and may have been much larger before treatment).

So I'm not here as much as I needed a break from Cancer. And feel like I've researched it enough for now, but you're right in that we can spend too much time researching. It's much harder to find meaningful research on Lobular, but when my surgeon took out my chemo port 2 weeks ago, he agreed that Estrogen drugs were most likely to impact ILC. He's a leading researcher and I trust him.

I know there are ILC subtypes, like classic etc ..... And then there's a more common, proliferative, and immune modulated types. I don't know much about the later, and haven't found much on them. My Path report only lists the former.

Good luck to everyone and have a happy new year

Kathy044 · January 2016

Proliferative, immune modulated and, I think, reactive are the three recently determined "molecular" subtypes of lobular cancer with which information there may be a potential for future treatments but nothing now. Check the ILC forum topics for last October. Here is one news report.

http://www.newswise.com/articles/view/640811/?sc=

Kathy

614 · January 2016

There is also Pleomorphic ILC.

Dear Leslie:

I am glad that you found doctors whom you trust. As Woodyb said, trusting your doctors is the key to your tx.

I am wondering, why do you feel that, "Radiation isn't considered very effective because of the erratic growth patterns"? What evidence supports that statement?

I am asking because radiation is given after lumpectomies to kill any stray cancer cells. It is also given after mastectomies at times as well. All of my doctors feel that radiation works for ILC. I went for second opinions and this was one of the only areas in which all of my doctors agreed. I was diagnosed with pleomorphic ILC and bifocal pleomorphic LCIS, as well as invasive tubular carcinoma. I trust my doctors who recommended that I have whole breast radiation to eradicate my bc.

I am glad that you have had success with Femara and that you found doctors whom you like and trust. Good luck with your tx. I wish you and everyone else a Happy and Healthy New Year.

Leslie13 · January 2016

614,

My own Breast surgeon expressed some doubts with my circumstances. And I'm being vain in that I don't want to mess up a very good reconstruction. I'm having a hip replacement in one month too, and I can't do both. My hip is bone on bone because of putting the replacement off from Cancer. I fear I'll be in a wheel chair soon without surgery.

Had my Dr's done a node biopsy prior to breast surgery, my circumstances would be different. I've always been able to read my body and I felt I had lymph node involvement. They kept saying no until surgery. I also had severe pain in my lower intestine that went away once I was on Femara awhile. I complained repeatedly about the pain, beforehand. CAT scans were negative. I had Femara for 6 months neo adjuvant treatment, but needed surgery much sooner. It's my fault too, because I fired the first breast surgeon at 3 months. I'd had the third imaging, as the tumors were checked monthly, and she told me she couldn't feel the tumor. I could, and asked to see the report. She claimed computer problems, so I asked another staff to run it. The tumors had increased, so she lied to me. She was including me in her 6 months on Femara pre-surgery trial. The new surgeon got me in as quickly as he could, but it still ended up being 6 months.

So I already think it's metastasized. But until proven, I can't receive stronger Endocrine therapy. When better, I'll do a colonoscopy. But I wouldn't have gone straight to implant on the right had I been aware of having 4 positive lymph nodes - I'd be doing radiation. But my Breast surgeon told me Endocrine therapy was my best bet now and that taking my immune system down wasn't a good idea. After this long the Cancer is likely in my system and it's up to my immune system and Femara,

614, did I read you have arthritis? I believe there's a connection between ILC and other connective tissue disorders. Do you think they may come from similar genetic mutations? The chronic pain and neuropathy started in my 30's

614 · January 2016

Dear Leslie:

What you went through is absolutely horrible. I am so sorry that you had to endure all of that. I know a lot now about bc now. I knew nothing before my dx. I am sure that it is the same with you. If you knew then what you know now, you would have certainly insisted on a SLNB at the time of your surgery. I am shocked that a doctor would not have performed a SLNB if the doctor knew that you had invasive lobular carcinoma. In addition, for a doctor to withhold information from you so that you could be part of her trial is unforgivable. I am hoping that your cancer has not metastasized. I am glad that you trust your medical team now and that the Femara is working for you. That is terrific news.

Once you have your hip replacement, you will feel extraordinarily better. My Aunt's friend just had one and she said that she is pain free and feels great. I am sorry that you had to endure breast cancer and extreme hip pain at the same time.

I do not have arthritis - Thank God! My boyfriend has Rheumatoid Arthritis, Myofasciitis - similar to fibromyalgia, and he has extreme neuropathy. He is in constant pain. It is awful.

I am very lucky that my breast cancer was detected early and that I am fine. It is truly a miracle. Lobular is so hard to detect so I am really lucky that my radiologist saw it.

I think that many cancers are related.

I am praying for you that your hip surgery goes well and that you do not have any metastases. I am glad that your reconstruction looks good. I am hoping that the doctors were able to remove everything in your surgery and that with the Femara, that you are totally fine now.

Thanks for explaining. I appreciate it.

stellamaris · February 2016

@614 I was dx with RA in 2006 at age 56. The first year was hell. My sister lived nearby and would come over every morning to dress Me for work. I was on methatrrxate, which made me very sick and I had to be taken off it as it was destroying my liver. What works for me is a combo of sulphasalazine and hydroxiquinine. I think thesecr used for colitis sufferers as well. So far I have no issues (feels like total remission). I do wonder now though, if the suppressed immune system triggered the BC. I certainly feel for your boyfriend and hope they find a tx for him that works. All the best to you as well. I have decided to try for clear margins again (3rd times a charm?). I will have the rr-excision on Feb 11. If it doesn't work I have a mx date for march 24. If it does work I'll have RT and hopefully have this behind me soon. Take care

Frustrated with Oncologist

Comments

Categories