Mother just diagnosed. Searching for info and options for her

Options
Googler007
Googler007 Member Posts: 3

So sorry if this is the wrong place to post. First time poster. Long story short is my mother, age 76, is facing a second breast cancer. First was DCIS stage 1 with mastectomy , no follow up treatment needed. 12 years later, in remaining breast ILC ( HER2+, ER- and weak PR+) was found. The tumor is over 5 cm, Grade 2, so we're praying it's Stage III. Getting PET/ MRI of breast, and of surrounding nodes and pelvis this week. It is also noteworthy that she has had unexplained mildly low red blood cell, white blood cell and platelet counts for over a year, but is otherwise in good health.

My concern is that my mom is throwing up her hands and is willing to just submit to whatever the first consult says to do. This doc is being very very conservative. Just wants Taxol at very low dose one time per week for 12 weeks, then re-evaluate and hopefully do surgery. His reasoning is that he does not want her blood counts to go down as a result of chemo.

I am a bit puzzled by that idea. Her counts are just a few points below normal, so nothing remotely critical at this point. Also , I am under the impression that there are drugs that can be given to prevent a drop in blood counts. Given the size of the tumor ( which is likely bigger than the ultrasound and mammogram estimated), wouldn't it make sense to hit hard out the gate and add in prevention meds, then ease off if the side effects are too bad and blood counts go down too far ??

I have not yet seen the complete pathology report, so I can't get into the nitty gritty just yet. But just in my limited perusal of options, there seems to be alot more that could be done that might make a big difference in shrinking the tumor as well as dealing with potential mets.

I explained to my mom that wanting to start right away feels right for her at this time, but what about part way into chemo when there is no going back? I want her to move forward in an informed way where she understands and chooses a course of action based on her very much individual situation. I fear that this doc pitching a chemo course right off the bat before getting more scans is a bit cursory. And I also wonder if HMO protocols might be influencing his conservatism around chemo. His not even mentioning using meds to offset lowering blood counts seems ominous to me, especially since he is both a hematologist and an oncologist.

At any rate, I have offered to pay for a Cleveland Clinic online second opinion consult as a way to get a different perspective.

Has anyone experienced something similar? How many opinions are folks going to gather? I do not believe this doc specializes in breast cancer. Where she is going at the moment is a general blood disorder/cancer center , not a teaching hospital and not a research facility. Just a place in network across the street from her primary care doctor. (who allowed my mom to go without a mammogram for 4 years until she found the lump on her own!) I get the feeling this is not a good idea, but do not want to disempower my mother by undercutting a doctor she likes.

Any advice, suggestions would be greatly appreciated!


Comments

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2017

    I wonder if it's more due to her age, not sure just an idea. Are they trying to figure out why her blood counts are unexplainably low? They might have standards of care that really do prevent them from doing certain things at certain levels. My career is in a different medical field than heme/onc, but we have restrictions like that, not set by any insurance provider but just good practice. Being one or two points off something in the blood work really does change the plan. I don't know much about counts and chemo though.

    You could ask the doc for a deeper explanation, or definitely the second opinion!!!!

  • dtad
    dtad Member Posts: 2,323
    edited May 2017

    Just a suggestion...how about getting a second opinion at a major university teaching hospital. I also agree that her age is influencing her treatment plan. Good luck and keep us posted.

  • Midwest_Laura
    Midwest_Laura Member Posts: 168
    edited May 2017

    I too suspect that age is a driving factor. Are there any other general health problems? Sometimes a required medication for another condition can influence the prescription of particular meds or chemo regimines as they can increase or decrease the absorption and efficacy of the cancer drug.

    Regarding the blood levels, I Had poor red and white counts before I started chemo. My MO prescribed a Neulasta shot for the WBC problem, but there was nothing to be done about the RBC. I took an iron supplement and maintained a high protein diet. My RBC tanked anyway. My MO said that all we could do was gut it out. I was 47 when I started chemo and came dangerously close to needing a transfusion to get my blood out of the danger zone. Perhaps your mother's MO is either a) not confident that she can get through the tougher chemo, b) looking to the surgery and any follow up drugs to deliver the final blow, or c) doesn't feel that the harshest of chemo is necessary in the situation.

    You need to consider quality of life as well. If the chemo really knocks your mother out, she won't be able to get the necessary nutrition and exercise that are an intragal part of fighting this disease. You can't just throw drugs at the problem. Your mother needs her body to be functioning as well as possible. Sometimes a softer approach produces a better result.

    Your next step should be to go back to the MO and ask, Why? And there's nothing wrong with a second opinion. Just be careful that you're not simply Doctor shopping until you get the answer that you want to hear. You want the *right* answer.

    Good luck

  • MTwoman
    MTwoman Member Posts: 2,704
    edited May 2017

    I am so sorry that your Mother is going through bc again! I am in agreement with the others above, I believe that her age (and RBC status) is affecting the options. I also, very respectfully and gently, suggest that you listen to your Mom and what she wants. It sounds like you want her to have all of the information, and that you'd prefer a more aggressive approach. But we all need different amounts of information. Some women need more, some don't respond well to more. And quality of life should NOT be underestimated. My father had laryngeal cancer. Due to his age, the treatment was surgery plus rads. If they had been really clear about the side effects of rads, I'm not sure he would have done it. He was already 80 and, after 2 bouts of hospitalization with aspiration pneumonia, they realized his airway wasn't protected when he ate or drank any longer (se from rads). He had a peg tube the last year of his life and it was awful for him. He could smell, but never taste the food that he had loved his whole life. To spend the last years that way is something that he never would have chosen had he known. The cancer didn't kill my father, but the side effect of one of the treatments left him with a life he never would have chosen and once he realized it would never get better, he gave up and passed away. I know the situations are very different, but I hope that helps think about the toll that treatment can take and the impact of that toll. She does need to have information on treatment options; but if she and her doctors decide to go less aggressive than you'd like, please do trust her judgment. ((hugs))

  • Googler007
    Googler007 Member Posts: 3
    edited May 2017

    Thanks so much for the feedback! I decided to keep my mouth shut and watch how it unfolded, so I said nothing to her one way or the other. Then she called me and had retrieved everything in her file. After reading it over, she decided that she would get additional opinions, but not necessarily transfer her care. She's decided to get as much info as possible,seek a full explanation of every decision her doctor makes, present to him the other opinions and have him comment. If she feels he is weighing all options and taking an individualized approach to her treatment, she will stick with him. And she came to this conclusion on her own and has emailed her first set of questions to the doctor already.

    As for the blood disorder, no diagnosis was ever given, and no diagnostic testing was done to investigate it. She had one visit, was told they would do watchful waiting and had her come back in 6 months. Over those 6 months she went on a reasonable anti-inflammatory diet (Whole30), lost over 10 pounds and 'lo and behold, the numbers got much better. The doc dismissed her diet as helping her numbers. He speculated that she may have had a chronic infection that was not presenting symptomatically and the antibiotic she took for a dog bite over the intervening 6 months had cured the underlying infection. Now, a few months later, the improvement has held and the numbers have improved more to just slightly out of range. Evidently, there is nothing wrong enough to warrant more testing, so she has no diagnosis.

    I told my mom that whatever she chooses for herself I would wholeheartedly support. As long as she is making informed decisions and is at peace with her choices, I will keep my mouth shut and support her in whatever way she wishes.

    But I know my mother. She is incredibly smart and is able to do whatever she sets her mind to. Blindly capitulating to a course of action that is a matter of life or death is not in her nature. Whatever treatment may bring she is ready for the fight. I am hoping chronological age will NOT be the primary deciding factor in treatment because she is overall healthy, very active, resilient and almost scary intelligent both in terms of "book smarts" and judgment. Underestimating her could prove fatal. And I hope she remembers that.

    I told mom about this message board and she has signed up. (Hi Mom!) I will continue to lurk and may ask an occasional question. She will take the rest from here...

    Thank you!

  • Jackster51
    Jackster51 Member Posts: 357
    edited May 2017

    A big welcome to your mom! She'll find a wealth of information on this board.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited May 2017

    Hi, I'm very glad you and your mom have found the site, though I'm truly sorry that you have cause to come here.

    I just wanted to add that if your mom was classified as Stage I with her prior diagnosis, then she did not only have DCIS. Pure DCIS can never be anything other than Stage 0. She must have also had at least a small amount of IDC to be given a Stage I diagnosis. It is very possible that she had DCIS in addition to IDC, but as I said, Pure DCIS is as the name suggests--in situ--and does not yet have the capability to break through the ducts and invade neighboring tissue. It could have been as small as a micro-invasion, but if she was Stage I, then something was found other than just DCIS. If you have access to her previous records, you may want to see what the hormone receptor and HER2 status were before. It'd be interesting to know if the IDC was HER2+.

    Best of luck to you all.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited May 2017

    Goolgler, Well done! It is awfully hard (well for me, at least) to let someone we love make different decisions than ones we might make for them. But to your credit, you gave her space and time. It sounds like your Mom is taking a very reasonable approach, and isn't going to just capitulate to her first opinion. Bravo! Glad she has also joined us (Hi!) and hope she lets the amazing women on these forums know what she needs from us. ((hugs)) to you both

Categories