Isolated tumor cells in lymph nodes with ILC

ingersollnic · September 2017

I was DX with ILC in 2015, it was around 5cm. I had isolated tumour cells found in 1 sentinel node.

I had Chemo due to the size, my age (43) and the isolated tumour cell. I had Docetaxol and Cyclophosphamide (as it was a lower risk for MDS, which my father had). I decided against radiation after reading all the studies I could find and getting a second opinion from a professor, as the risks I felt were too great to my heart and lungs.

I run 35 mins every day (nurses study shows the decrease in recurrence with exercise is more effective than any other treatment) and am on ovarian suppression and letrozole as letrozole is more effective for lobular cancer and I am on Vitamin D supplements due to my specialist feeling there is a strong link of Vit D deficiency and breast cancer (chicken/egg debate notwithstanding on that issue).

Best of luck with it all

Cliffyw · September 2017

We just got back from NY today after our appointments yesterday, so I wanted to give an update.

Medical oncologist - we met with two medical oncologists at MSK, including chief of medicine. They agreed on the chemo recommendation for my wife - that she should receive AC-T. They asked if we had oncotype tested, but did not seem interested in us having it done now, and felt regardless that AC-T is the better treatment for her. They did disagree with our local oncologist regarding the eventual endocrine treatment. They think she should go directly to OS+AI and not start with tamox. He also recommended that when we start the endocrine, she should take prolia (in response to me asking about bisposphonates), although suggested it may be tough to get insurance to approve that.

Radiation oncologist - I was a bit surprised at this appointment. Of all the doctors we have met so far, this was the first where the person pushed that my wife should get treatment there if it were possible for her, alluding that other radiation oncologists at some other institutions are more likely to not give proper treatment. He mentioned that in the context of trials that he has overseen where he claimed a high percentage of cases he reviewed (30%) did not meet the QA (I assume he meant quality assurance) prescribed by the trial. Honestly, I think this was effective on my wife. She lost her mother to lung cancer (a non-smoker) when her mom was only 60, and was often disappointed in the treatment her mom received, so she is concerned about not trying to get the best treatment right away if it is available to her. This doctor did exude confidence - for example, when discussing what regions she should have treated, he had a clear plan, while our local rad onc said she still needed to think about it. Logistically, it is somewhat difficult. If she just receives standard photon treatment, it would not be bad since she could stay with her brother 30 minutes outside of the city and either travel to NYC for treatment or to their campus in Westchester. However, he strongly suggested that she should enter into an ongoing proton clinical trial. It is randomized so there is 50/50 chance she would receive protons. The problem with that is the proton center is in Somerset NJ, a 1.5 hour drive from her brother's home. She would likely need to stay in an extended stay hotel in NJ. And since she would not want to be separated from our 3-year old son for 5 weeks, we would need to try to figure out some help she could have there since I would not be able to be there the whole time due to my job.

vlnrph · September 2017

Cliff is doing a fantastic job for his wife on analyzing all the issues involved in treating this beast. He even has another (presumably) full time job! Plus, they have a darling little boy to distract them...

Not to add more to the burden but, with such a young age at diagnosis as well as family history of mom's non-smoker lung cancer, has anyone suggested genetic counseling? If an inherited mutation is present, there may be an impact on radiation therapy decisions. Some feel that 'healthy' cells with a DNA repair defect might not recover well from the "burn" and so could modify that plan. On the other hand, this factor may not apply in her case at all.

Best wishes for a good result. Know that you are choosing the best alternatives given the options available at this point in time, especially with consults from experts at top facilities.

Cliffyw · September 2017

Hi vinrph, thank you very much for the kind words. I really don't know what I would do without my wife. My son and I would be lost, so I am trying to do all I can to make sure she is around for a long, long time. I greatly appreciate all of the info available on this site.

We have done genetic counseling, and the results were mostly inconclusive. In the initial panel (BRCA and PALB), they did not find any conclusive link to BC, but did find two variants of uncertain significance. Following that, they did do a more thorough genetic panel and did not find any increased genetic risk factors to cancer. I was a little surprised since I did expect them to find something. She does not know much about her family history other than her mother ( her parents were both immigrants here and she never really communicated with the family that stayed abroad), but does know that her grandmother passed away at a young age (~50) but does now know from what.

Despite the inconclusive genetic result, my wife opted for the prophylatic mastectomy on her other breast since she did not want to go through the imaging/biopsies/uncertainty every year. Interestingly, the local doctors did not push us in that direction, but the doctors at MSK seemed to think it was the right decision given her young age and the nature of ILC.

ShetlandPony · September 2017

I would be inclined to go with the MSK MO on the chemo and endocrine therapies. I would probably want to discuss Prolia vs. weight-bearing exercise and nutrition (D3 plus foods with K2, magnesium and calcium), and whether a baseline DEXA scan to check bone condition would be a good idea. From what I have read, Prolia does sound better than bisphosphonates, but I have not done extensive research. (It is my belief a high-powered onc from a major cancer center may be more able to get insurance approval for stuff.)

Why did the RO strongly suggest the trial?

Cliffyw · September 2017

We definitely intend to follow the MSK recs. Fortunately, for chemo they are the same. And if our local onco does not want to go directly to AI, we could switch treatment to MSK for that, which seems possible since the endocrine follow-ups are not that frequent (is that right?). Relatedly, the MSK doc sent his note to our local onco yesterday, so we received it also. One thing that depressed my wife is that his argument in the note for going directly to AI is because (I can't remember the exact words) of a high likelihood of near-term recurrence. I wonder exactly what he means by that.

Do you think there is a difference in the ability to get approval for things like Prolia depending on the submitting doctor? Is that due to their ability to push their payments department to get it? For the exercise, would that be instead of Prolia, or in addition to? And would that be because of negative side effects?

I am not entirely sure about the motivations of the RO. It may just be because he is a principal investigator on the trial and wants to make sure he gets a good number of patients. We do think he is probably a good RO to use, but just not sure if living in New Jersey, away from any support would be the best thing even if the treatment theoretically could be better (though as yet unproved).

My wife started her chemo (AC-T) treatment two days ago. So far, she is feeling well (thanks to the anti-nausea medicines), though it sounds like different people feel worse at different times during treatment?

SpecialK · September 2017

cliffyw - can your wife not receive rads at the proton center at U of Maryland in Baltimore or at Georgetown? Also, I think if you indicate your wish to proceed with OS-AI endocrine therapy to your oncologist, he/she would cooperate, it is an accepted approach, not anything cutting edge - there are many women on this site who have done this. For Prolia, many insurance companies require a trial of bisphosphonates to see if the patient can tolerate them before moving on to pay for Prolia, as it is a much more expensive medication. As Prolia begins to be more widely used as a companion medication with aromatase inhibitors, insurance companies may start to pay for it with less resistance. Getting insurance coverage is less about who is asking for it and more about having tried the less expensive alternative first, or supplying a reason why the less expensive drugs cannot be used.

ShetlandPony · September 2017

In my interpretation, the comment just means what you already know: your wife's case seemed risky enough to warrant chemo, so let's not mess around with the endocrine therapy but go straight to the "strongest" one. I doubt your local MO would refuse to go that route if both MSK and your wife prefer it. They can keep tamoxifen in their back pocket in case the AI side effects are unusually difficult.

Hmm, that does seem like a conflict of interest for the RO, doesn't it? Doesn't necessarily mean he is wrong, though. What exactly are the two choices you are considering? Is it protons vs. photons?

Regarding getting approval, it is just my surmise that one reason I have never had any trouble with approval for anything is the combination of fairly good insurance plus being at an NCCN center. There is a doctor at the insurance company reviewing requests, and I can imagine him/her being less likely to argue with a doctor from a prestigious institution. Not fair, but there it is. Sometimes when there is a denial, they talk to each other by phone; it is called peer to peer review. Edit: So you want someone who can do a good job at supplying the reason. Have they been able to get this approved for other patients?

You could do a search for Prolia here; I know ChiSandy has discussed it quite a bit in the past. Also there are some threads on bone health. (Click on sort by relevancy at the bottom of the search screen.) For me personally, I like to inquire about taking fewer drugs and using natural approaches when possible. For example, I went for melatonin pills rather than Ambien to help with sleep. But I also know that in many cases a drug is exactly what is needed. I did not hesitate when my onc recommended Taxol to me; I just said, how soon can we start? (Next week. Awesome.)

So far, so good with chemo for your wife! Gotta love those anti-nausea meds. Report everything to the chemo nurses and/or the doctor. They know how to mitigate side effects, and it is better to address them right away. Sometimes it is as simple as slowing the infusion or the timing of a pill. You guys are doing great. Accept offers of help and be ready to tell volunteers exactly what they can do for you.

Sending good wishes to you and your wife and your precious child. "Love begets courage." (A yoga saying)

Cliffyw · September 2017

Thank you SpecialK and ShetlandPony.

Regarding photons/protons: Baltimore is a possibility. We could arrange to live their temporarily (short-term apartment or hotel) and I could deal with the long commute for 5 weeks. They even have two potential trials there - one randomized (the same study that MSK is participating in) and one non-randomized (everyone gets protons). I had considered the latter option ( I wouldn't want to relocate to Baltimore unless I knew we were getting the guaranteed treatment), but the MSK RO was persuasive in arguing against it. His argument, and I have heard this also from a friend who is an RO (for GI cancer), is that the choice of RO is more important than whether you are receiving photons or protons. Photon treatment with DIBH already significantly reduces the energy reaching the heart and choosing a good RO who selects the appropriate treatment and sets up a well-designed field is important. So then the question for us is twofold:

whether it is worth it to go to MSK to get treatment from him when we think we have a good RO in DC (though maybe not as good/experienced as the one at MSK - however our RO friend knows the local one and believes they are good)
If we do go to MSK, do we want to enter into the trial or just use the more convenient option of receiving photons (where my wife could live with her brother temporarily), or take the risk of receiving treatment in NJ for the potential benefit of photons.

Good to know regarding prolia coverage. I will need to do more research on the benefits of prolia vs bisphosphonates. The MSK MO does think there is evidence that it is better, but I haven't read any papers that compare them outright. From what I have read so far, there does seem to be some evidence for both in reducing recurrence, but the results in each case are not conclusive.

Isolated tumor cells in lymph nodes with ILC

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