Cancer consultant?

Shelligirl

Is there such a thing as a cancer consultant? If so, has anyone here used one?

I was diagnosed 6/18 and have yet to start treatment. I have had every test and even some twice, but have only met with my oncologist once and I was naked from the waist up when she talked to me.

I have no idea what’s happening and have a million quall my information has come from the internet.

Is it possible to hire an expert that will explain my exact situation to me? I’ve looked online and the ones I’ve found seem like bots.

Ingerp

I got most of my information from this website. As I’m sure you know, there are specific threads for different diagnoses, different treatments, different treatment start dates, . . . There are several Stage 2 threads. My guess is you will have either neoadjuvant (pre-surgery) or adjuvant (post-surgery) chemo, right? Have you met with a breast surgeon yet? Many women’s first decision is whether to have a lumpectomy (usually followed by radiation) or a mastectomy. Some women get genetic testing depending on their family history.

What is your next step? Who is your next appointment with? There are *many* women here with a *lot* of BC knowledge. Maybe for now stay off of google and ask your questions here. You can also send private messages to individuals.

Scrafgal

Shelligirl

You are right to feel frustrated at this point. In general, it is best not to delay treatment, given a diagnosis such as yours.

The cancer consultant that you seek is your oncologist. Get a new one if that person is not acting with a sense of urgency.

I was diagnosed on 12.27...had full info and a treatment plan in place by 1/9...mastectomy on 2.7....healed from the surgery completely and started chemo on 3.23. At all times, I was fully informed.

I was at a major cancer center. If you are not, then perhaps the delay is related to doctors needing to coordinate information and meetings to jointly determine your plan. In that case, maybe you need to be more forceful in pushing things along.

DogMomRunner

I can tell you what my MO said was my likely treatment path. A tumor 1.8-2cm or larger (with or without lymph node involvement) there would have had neoadjuvant chemo and then surgery (lumpectomy if BS felt confident about getting clean margins, mastectomy if not) then radiation. Possibly Herceptin and/or perjeta up to a year.

I had an MRI to better define the size of the tumor due to my breast tissue being really dense. The tumor was much smaller than originally thought and my BS thought she could get clean margins with a lumpectomy. So I had the lumpectomy first. Now I am having chemo (Taxol) and Herceptin. Three more Taxol treatments and then I will have radiation. I will continue to get the Herceptin until May 2020.

As others have said, your MO and BS should be able to guide you through this but if you don't feel confident about them, seek another set of doctors

gb2115

Your oncologist should be, for all intents and purposes, your "cancer consultant." If you are not comfortable with them see about seeking out a different one.

The fact that you have been diagnosed in late June and have no idea what the plans for your care might be is honestly very alarming. Are there any other doctors involved in your care, like a surgeon? I hope you have seen a breast surgeon. A nurse navigator?

Shelligirl

Scraf, Ingerp and Dog Mom, thanks so much!

I’m at a major cancer center in Dallasand everything is done through a portal. You can send emails, which I have done. I met with my surgeon and oncologist on my first day there. Both meetings took place in an exam room with me naked from the waist up and them standing. I just assumed that after all the test were completed, I would get a debriefing, in an office and I would have a shirt on.

I’ve had two biopsies and the results differed. The first was her2+, Er+, Pr-, Ki-67 of 50% and the second the er changed to negative and Ki-67 dropped to 45%. The person that called with the biopsy results couldn’t tell me what the results meant and only said that with my numbers my oncologist would probably want to start treatment soon. Sure enough, I received an email the same day saying that I needed to schedule an CT scan. I’ve already had an MRI.

I have friends that were diagnosed and in chemo the next week.

I’m stage two because I haven’t had surgery to test my lymph nodes, right? Yet, they want to do chemo before surgery. All I’ve been told is that my cancer is treatable, but how treatable? Give me some numbers? But, they probably can’t give me numbers until after surgery; hence, a catch 22.

If I sound frantic it’s because I am and the reason is because I had the dearest of friends die last year from BC. She died two and half years after her diagnosis and those years were spent in treatment-hell. If I have a good chance of living 10 years then it’s worth the fight, but if my odds aren’t good, I would rather have one good year and less treatment.

I’m looking for an honest answer to my question from an expert that isn’t just running me through a system. I can’t be the only one that feels this way. Seems like there would be a retired oncologist out there that has a consulting business for people like me.

Shelligirl

Gb215,

I’ve done tons of stuff: met with a plastic surgeon, had an echo, port, two biopsies, MRI, and so many mammograms that I’ve lost track. Chemo is supposed to start after the CT scan. I’ve been at every test on time and never not been available or rescheduled. I don’t know why this taking so long for me. I’m not sure this is a long time and that the few people I have met at this hospital that started chemo so quickly aren’t the outliers and I’m the norm.

WC3

I wouldn't doubt that there is somewhere out there!

I felt a little lost at first as well but after having a few different consultations, I ended up at a comprehensive breast cancer center. I was assigned a nurse navigator and met all of my doctors within the same week.

I didn't have as much interaction with my nurse navigator as I thought I would but she did help me sort some insurance stuff out. I had neoadjuvant chemotherapy and my MO's office was the contact point for all of my needs. It's possibly that my nurse navigator was the one who handled this behind the scenes, I'm not really sure. I would just tell my MO's office that "I have X problem" and they would sort it out.

As for the flow of things,

After my biopsy I had an MRI, PET/CT (not common), echo, port placed, and then a week after my port placement and about a month after my dx I started chemotherapy.

My surgery was arranged after 4 of 6 infusions and I had it a month and a half after my final chemo.

I had my second tumor markers either at the 3 or 6 month post chemo mark...I don't recall which, and an MRI 9 months post final but should have had it sooner, I was just unable to.

wrenn

The beginning is so scary when you don't know what to expect.

It is ok to tell them that you would be more comfortable with a shirt on. Or just put it on. I would make a list of questions and either ask in person or in an email and if you aren't satisfied with the answers ask for clarification. I think many doctors give you the information you ask for and don't want to pile on too much since many people just want to be taken care of without the details. I have found physicians very helpful when I ask.

gb2115

Oh ok, good. It sounded like they just left you hanging out there so I am glad to hear there is a plan. What is your next step?

Question...when you say you were sitting there naked from the waist up while they talked to you, do you mean actually naked or with one of those stupid flimsy paper tops on? I have never known a provider to just leave you completely naked...even derm only leaves the pertinent things uncovered and then covers you back up. My MO and surgeon examine me then put the gown back and then we talk. They shouldn't be leaving you bare skin like that, that's pretty poor bedside manner!! And horribly embarrassing probably.

All of this stuff would be good to talk with the nurse navigator about. That's what they are there for. I think mine helped me with coping more than with logistics, though she did that too.

Shelligirl

Gb215, Thanks for asking. I wasn’t very clear. I had the paper gown on. I wasn’t feeling modest, but it didn’t feel like the time to ask a complicated questions. The doctor never sat down and for some reason I just assumed there would b ano

illimae

shelligirl, I’ve never heard of a cancer consultant but I’ve often thought that I should be one, lol. Several years ago I helped my brother in-law with his appointments, paperwork and treatment, he just wasn’t grasping it or asking any questions on his own, so I led everything. Later, when I was diagnosed myself, I poured into learning medical terms, research and options. Full comprehension is difficult when you’re in a newly diagnosed emotional state. Your cancer center should have someone you can reach out to or you can always ask here.

Shelligirl

I will check with them and see if they can recommend someone. Thank you, Ilimae.

I used to think I was smart, but then came menopause and too many emotions with all this and it’s just all too much.

gb2115

Oh great, glad to hear you weren't naked!!! I hate the paper things though...

Cocogal

Shelligirl, I have read this forum since shortly after I was diagnosed and am thankful for all the information I gained, but I never wanted to make a post until I read your post, because your experience is so similar to mine. I felt it took me a year to get my bearings on my cancer, as I had absolutely no experience with the disease and the professionals I feel were less than forthcoming.

I'm sorry this is going to be long.

Similar to you, my diagnosis started in Ft Worth. I was MBC from the start because I had one 8mm nodule in my lung with an uptake and some other suspicious areas, but technically I was oligometastatic. I learned I had to educate myself. I learned my markers aren't good, the PR- and Ki67 of 40 being the trouble. Much later I found the stats indicated a probable life expectancy of 2-3 years from diagnosis and while no doctor ever discussed it I feel those probabilities manifested in their behavior.

I have been to the famous large institutions, the ones with portals, and to private practice oncologists. The cancer industry and professionals are not what I consider as service oriented. Long waits, short appts, call backs can be in days. Through the last two years my primary care doctor has been the only doctor who has shown any zeal in saving me, but he has to defer to the specialist, the oncologist. The cancer professionals have been less than forthcoming with information; for example I kept asking for bisphosphonates to save my bones from the hormone treatments, but they wouldn't give them to me, just a vague decline to my request. I looked into the side effects and with the right one there was little risk. My primary care doctor wanted me on them from the point of diagnosis. I kept asking oncologists for them because when combined with the right statin they prevent bone metastases. By the time I got to oncologist #4 I point blank said, "You won't let me have them because you don't think I'm going to live long enough for my bones to be an issue (from the hormone therapy)", and he said, "That's right." Well at that point I had already had bone deterioration and had lost 3/4 of an inch in my height after 8 months of treatment and was experiencing bone pain. Oncologist #5 gave me a prescription for them at our initial appointment.

Eleven months from diagnosis my third PET scan showed my lung nodule completely gone, not even scar tissue. There is too much minutiae with that nodule to bog down here, but I have to leave the purpose of it's existence in God's hands because that tiny little thing has determined everything about my treatment and life. Here is the cancer industry rub, that lung nodule wasn't expected to go away without chemo or radiotherapy, especially while my breast tumor stayed, thankfully stable.

I wanted a double masectomy from the beginning. I could have headed that way only if I agreed to neo adjuvant chemo. I said no because I found research that it could cause metastases. My idea was to stay oligometastatic though the cancer professionals had the attitude the MBC horse was out of the barn the fatal outcome inevitable. Then I was told if I respond to HT surgery may be a possiblity. What I finally figured out was that that surgeon was not going to let me have a masectomy and would only do a lumpectomy. I had wasted precious months waiting and hoping when what I wanted was never going to happen, it was not a hard decision to leave that world class surgeon. In the course of finding another institution I learned about possible immunotherapy coming for MBC so I was less keen on surgery for awhile until I found months later I was not a good candidate for it.

Earlier this year I read and have embraced some of the ideas in Jane Mclelland's book, How to Starve Cancer and recently I have been researching Joe Tippen's experience with fenbendazole.

But here is the sobering kicker, I recently had a liquid biopsy that indicates my cancer is chemo and radiotherapy resistant. My initial biopsies were standard faire and did not provide specific individualized treatments or DNA information. If I had gone ahead with the traditional chemo/radiation in the beginning to get my surgery it very well may have not worked and could have even made me sicker.

I definitely still plan on having the mastectomies, with the now known resistance surgery is my only safe option. Currently my disease appears stable with HT. I feel and look healthy. The HT has aged me quicker, some joints, my skin and hair are thinner. But regularly people who know my situation say, "Well you look good." And I understand.

I also would add, my husband has accompanied me on almost every appointment and he admits if he hadn't seen what has been said and done it would have been difficult for him to believe. My appts with the current oncologist are so short he timed the last one, two minutes twenty seven seconds.

I can only share what has happened to me and it hasn't been what I would have expected it to be. I compare this to being on the Titanic, I would not have stood in line or been crying saying goodbye to my husband. I would have been ripping those beautiful mahogany doors off their hinges and doing all I could to get us both out of there. We have to be our own advocates. I'm glad I found this group, found the others I mentioned above on FB and learned to find research on PubMed and other sources. Your welcome to ask any questions you like.

Shelligirl

coco girl, thank you so much. I have read your post at least five times and opened dozens of new pages to google terms and books. Thank you too, for understanding my frustration.

In a perfect world, it wouldn’t be up to us to ask the prefect question before being told that long term bone health isn’t a priority. Your story is exactly why I have so much anxiety. I don’t trust that I am being told everything, or much of anything.

I am scheduled for a body scan this week and then supposed to start THCP chemo. After reading your post and a quick google of neo adjuvant and metastasize and I’m wondering if I should visit MD Anderson before starting chemo. My Big Dallas cancer center just seems to be running me through the “standard of care” without any consideration for my choices.

I asked about fasting before chemo and was told that a nutritionist would meet with me on my first infusion day. Maybe they have a time machine and I can go back in time and restrict my calorie intake after she educates me, so my first infusion is as productive as possible.

It’s a million dollars to treat this, and the more tests and treatments the better. Attitude makes the difference, so we better be happy and smile. I think they do have a time machine and it’s been set to the 1950s. We need less pink and more information.

Thank you again. Your generosity is sincerely appreciated

Shelligirl

Tess111

Hi Shelligirl. I am sorry to see that you have had to join us here on breastcancer.org. As you probably already know, not all breast cancer diagnosis are created equal. There are so many things we have to educate ourselves on and we have to do it rapidly, especially if you have an aggressive form of cancer.

When I was first diagnosed, we did not realize that I was Her2 positive. There were delays after delays. (In my case, my GYN office filed my notice that I needed a diagnostic mammogram and didn't notify me. Fortunately, the hospital notified me a few weeks later. Then the hospital was upgrading to 3 D mammography and therefore, had torn down their own machine and my lumpectomy was delayed for 2 weeks. Then my intended MO's and RO's were going on vacation, and then my second opinion MO and RO - same thing. Argh!!! Then when it was decided I needed to have my sentinel node taken, the surgeon was on vacation. When we finally got to starting chemo and targeted therapy, my husband's boss went on vacation and we had to push it back another week if I wanted my husband (who is my best friend) there. I cannot tell you how frustrated and scared I was.)

Because you are Her2 Positive and grade 3 there is a definite issue in delaying treatment. Here is a link to a study entitled, "Impact of timing of trastuzumab initiiation on long-term outcome of patients with early-stage Her2-positive breast cancer: the "one thousand Her2 patients" project"

I know all of this is a lot to take in. I have a folder full of research on my computer regarding my own specific type of breast cancer. I regularly read the abstracts from SABCS about the latest news and research. Another BC survivor has a forum and regularly gives links to the latest news. There is a lot of information to be found here.

You can do this. I wish you all the best.

Anotherone

shellygirl , well done in trying to refuse to be processed like a sausage in a factory.

They say cancer takes years to get to the stage of a lump so I am not sure it is in your best interest to hastily go with any treatment. It has been 6 weeks since I had my diagnosis ( delay was not of my choosing) but I am not that concerned about it as it gives me time to do a research and prepare. I of course can not tell whether I am right - we will never know.

Apart from finding a Center which does comprehensive complementary list of therapies ( vitC, oxygenation, oncothermia, nutrition and supplement advice, spiritual review) , starting COC protocol, changing my diet , weeding out complementary optikns I would not be happy to pursue either at this stage or in the future, starting many supplements and reviewing my stress and frustration triggers, reading books on the topic I am having tests done and trying to prepare for chemo - arrange cold caps etc.

I think you are after something like this guy :

Www.canceractive.com

I liked his website - no selling and what I believe misleading info like on some other cancer guru's sites.

sweetp6217

My brief history and a question:

I discovered a lump, got in to see my OBGYN a few days later (she found two lumps). Told me it could be nothing and ordered a mammo on the left and ultrasound. (The ultrasound was 24 days after discovery). Was told by the radiologist screening the ultrasound that I had Cancer. Not an oncologist, the radiologist! They took biopsies which came out positive and the results were posted on the online chart before I had a chance to see the Surgical Oncologist. I spent a couple of days having a little out of body/denial, whatever. Surgeon explained it all, gave me 50/50 whether to do the full on mastectomy or to do lumpectomies. Studies were mentioned, but I didn't want that since I might not get the best treatment for my case. I skipped doing genetic testing. THEN, I met a nurse/coordinator who introduced me to my MO (medical oncologist). My MO laid out the plan, the SE, etc. It looked like there was only one avenue of treatment for me, that is if I didn't do any studies. I was made aware that there was a team of health professionals looking after me; my first thought Ca-ching! I also remember that the MO was as far across the room as he could be (big room) but he made time for what questions I had. I also sent questions to him and his staff via the online chart and he answered them quickly and without added cost to me. I also had MRIs, Pet scan, DEXA scan before the radiation and other various tests.

I also read a bit about other treatments including none, boy did I have a lot of time?! But, I decided to go ahead with "the plan". At least I had proof that the chemo was working for me. The lumps all but disappeared during the first six TCH(P) sessions.

I went through all of the treatments (began 54 days after discovery): chemo, lumpectomies (negative at this point), followed by radiation. Also started Femara more than a year ago. I am now seeing a new MO and she recommends the genetic testing and I actually agree at this point. But, I have a question; If I had radiation treatment 1.4 years ago, would that have any effect on the results of genetic testing?

sweetp6217

Shellgirl:

Sounds like your team isn't up to snuff with communication. One thing though, I really wanted to take part in a group talk with women just like me, but it took place while I was working and was only once a month. Yes, I did work all the way through with only a couple of scheduled work days off. This website was pretty much my only source for most information. The people here are so helpful posting information and links that I would have otherwise never found. My MO didn't appreciate Dr. Google, etc. but had little to say about this wonderful place.

gb2115

Sweetp6217---no, previous radiation will not affect your genetic testing results!! No worries there!

sweetp6217

Thank you gb2115