Understanding Diagnosis and Treatment

Ewygirl

Hi All! I am writing as a friend of a person (My mom's best friend. My mom has passed, and I help her friend out with errands and medical appointments) just diagnosed. I will do my best to relay the information as correct as possible. I am looking for ideas, suggestions and validation.

A Lump was detected, and all of the tests were done. The initial report: Tumor about 3.5 cm in size. 90 % Estrogen and 90 % progesterone positive, 0 % Her+. The lymph node biopsy was inconclusive. A lumpectomy and Lymph nodes were removed. Pathology report stated that the tumor was 5.5 cm in size and that the lymph nodes were matted, but that a 3.3 cm cancerous tumor was found in the armpit lymph node. The surgeon stated that if the original pathology report indicated extensive lymph node involvement then she would have removed more lymph node during the surgery, but due to my friend being 75 years old and in fair health (multiple medical issues) that she only removed what was necessary. We met with the Oncologist yesterday. Chemo, radiation and hormone therapy are indicated. They are staging the cancer at 3 a or b. We were told that it does not matter if it is a or b, because the treatment protocols are the same. As to which type of chemo will be done is up to my friend. Her choices are a low dose of Taxol, 1 treatment every week for 12 weeks or Intermediate dose of Taxotere and Cytoxan, 1 dose every 3 weeks for 12 weeks. My friend is undergoing a PET scan today to determine if the cancer has spread. The oncologist stated that they can start treatment in 10 days.

The questions and concerns that I have are:

1. From the beginning it has been a fast process: Found, tests, removal, start chemo all within a months time. Is this normal? It just seems so rushed and overwhelming.

2. Which Chemo do you feel is best for her? I understand that it is her choice. If it were me I would do T and C.

3. My friend's daughter is somewhat against chemo and radiation and would like to use food and marijuana oil as a treatment. My friend's doctors do not feel that with this type of aggressive cancer that it would be wise. My friend is so quiet and her daughter is bullying her slightly with the idea of this treatment.

4. Should my friend get a second opinion? My friend is concerned that now she has been told that her cancer is aggressive, that any delay in treatment would cause the cancer to spread more. I encouraged her to wait until the PET scan report is done to decide her next step.

Any insight would be helpful. My best friend won her battle with breast cancer 2 years ago, but she was stage 1. Thanks in advance.

Curlyq1974

Ewygirl, you are such a good friend! Wow! I'll answer your question in the order that you have,

1. My cancer diagnosis, to surgery to chemo took about 2 months. Diagnosed 12/2, surgery 12/18, chemo started I think in January... yes, it seems fast, but most of us would prefer to have it that way vice the wait and anxiety.

2. Chemo - I have not a clue. Every person is different. What works for one may not work for another, what combinations, what drugs, all of that I left in the hands of my oncologist. I had to trust that he would guide me as he would his own daughter or mother. There is no way possible that I would be nearly as knowledgeable as an MD.

3. Family bully - YIKES. I'm not sure how to hand that? I'm sure the daughter just has her Mom's interest in mind. I am not a big fan of the food/marijuana treatment. I just don't know enough about it to say it is a viable option.

4. Second opinion - if your friend is uncomfortable at all with her treatment options, yes, I would say a second opinion. I did not have a second opinion. I did a lot of research on my docs, and was 100% confident in the protocol they prescribed. I was comfortable from start to finish. However, if I wasn't I certainly would be looking for a group of doctors that put me at ease.

Reading this back, it isn't the best response. Not very helpful, I know, I'm sorry!! But good for you for being there. Whatever your friend decides, just support her decision, right, wrong or indifferent. This is such a roller coaster ride! I am so grateful for the friends I had that were by my side thru treatment. Prayers for you and your friend.

Moderators

Ewygirl, welcome to Breastcancer.org, and Curlyq1974, great response!

If your friend would feel more comfortable having a second opinion, than she should do so. However, if she is comfortable with her current team, perhaps best just to move forward with their recommendations, considering they have all the relevant information. As for her 'bully' daughter, perhaps she could accompany her mom to an appointment, where they could discuss together with her treatment team. Best is to be able to show her daughter existing research findings with outcomes.

Take a look at this, for example, on what is found to be recommended for Stage IIIA Treatment and Stage IIIa

Kicks

I am surprised that your friend did not have full body CT/MRI (with contrast), Bone Scan and PET Scan before any surgery with there being node involvement to determine the extent of any possible spread.

What was the type - IDC/ILC/IBC? Makes a difference in initial TX plan - surgery first is not always the first TX plan. Neoadjuvant Chemo ( help pre- surgery) is the SOP for one type and becoming more common with others that are advanced to attack and shrink the mass(es) hopefully for a complete response,, but at least to make surgery less invasive and with good margins.

How well is she healed from mast.? How long ago was it?

1). My time frame was a week from 'it' first presented to having the DX at 8 the next morning (Fri) had the path. report - IBC. Saw my Surgeon on Mon, Rads Dr on Wed., Chemo Dr on Thurs and then 17 days after DX started neoadjuvant A/C after a lot of Scans, tests and port implant.

2) Only her Drs can have the information to suggest the possible TX plans. Her health issues come into playing, also depending on what they are as to possible options. I found the weekly adjuvant Taxol 'not nice' at all as I was completely EXHAUSTED the entire 12 weeks. The 4 neoadjuvant DD A/C (every 2 week Adriamycin/Cytoxan) was easy. For others - it's reversed. If she has heart issues then Adriamycin would not be an option as it can be be hard on the heart. But her Drs should have more information that is pertinent to her.

3) An appointment the the Nutritionist at the Facility can give a lot of input on nutrition/food for support. There are many 'things' that can/do give the body support in fighting the 'Monster' when added to medical TX - but not replace with unfounded 'folklore' claims.(Remember that Laetrile was going to end all cancers - WRONG!)

4) If it were me (or a loved one), I would have already gotten a second opinion before just jumping straight into surgery.

Suggest to her before her next appt, to get a note pad and write down all the questions she comes up with to ask the Dr, make a second copy to hand to the Dr. She could take her smart phone or a tape recorder to the appt and record exactly what the Dr actually says - not TRY to remember later from notes what might have been taken.

Just my thoughts.

Ewygirl

Thank you Curlyq1964 and Moderators

I am trying to be a good friend, but she is not my mom. The daughter lives in another state and can not attend the appointments. I do face time her while we are at the doctors and I cringe at the ideas that she is proposing. But again, I am trying my best to be objective and supportive. I have no doubt that some alternative treatments have "cured" people but I am stuck in the middle of a woman who is overwhelmed and a daughter who wants what is best for her mother, without hearing what her mother is telling her what she wants. I will look for existing research findings with outcomes. That is a great idea. Thank you for the recommended treatment sheet. It looks very helpful. I guess from time of discovery to treatment is a short time frame. Thanks You for letting me know your situation Curlyq1974. As I said, everything could change if the PET Scan reveals that it has spread. Thanks again!

Ewygirl

Hi Kicks!

I do not know what to say about her not having the PET Scan before the surgery. They did find a lump in her armpit along with the breast. She did have a biopsy but it was inconclusive. She did have a bone density scan but I believe it was because they thought that she would be doing hormone therapy right after the surgery.

The doctor's made no mention on the type of cancer. But, I will bring that up at the next appointment. This makes me uneasy.

She had a lumpectomy not a mastectomy. She had the procedure done on 3/1. The surgeon examined her yesterday and said that she was healing well.

You have touched on what I am feeling that it has been SO RUSHED that I do not feel real conversation regarding treatment are being had.

It is terrible for me to say but they are a breast cancer treatment center and I only feel like she is being treated like cattle. It has been so emotional. We leave the doctor's feeling relief that she is being treated then I feel like we were rushed and not given any supportive care. We brought up nutrition and were given a sheet of foods to avoid and told to eat fresh fruits and vegetables after washing them with dish soap.

A part of me wonders if her daughter's forceful nature, concern and desire to treat alternatively is causing the doctor to rush to treatment.

Thanks you Kicks! I understand now that there is not dilly dallying when it comes to locating a lump in the breast. But, that there has not been enough talk and understanding of what is going on her care. They did give us handouts, which are helpful when trying to process all of this information. Thank you again.

ElaineTherese

I'm wondering if the Breast Care Center is rushing things because your friend is Stage III. I was Stage III, and I got my doctor appointments, pronto.

Your friend is Stage III with nodal involvement. No, diet and cannabis oil are not going to do the trick.

I had 12 weeks of Taxol after dense dose Adriamycin and Taxol. It was OK, but it gave me diarrhea, which I managed with Immodium. It did make my bones a little achy, and I lost my sense of taste. I later found out that I could have saved my taste buds if I had only sucked on ice during the infusion.

Your friend should get a second opinion if she thinks it will help her sort out her options better. I didn't get a second opinion because I was happy with my team, and liked their approach to treatment.

Thanks for looking after your friend!

Kicks

A Bone Scan is different than a DEXA test (bone density test). A DEXA is quite common for older women as it is to check tje density of the bones in relationship to Osteopenia/Osteoporosis, not a DX with BC. It is done yearly if/once you are Osteopenia or Osteoporsis to monitor the density and rather of not the med is working to keep the density up and possible change the med if necessary. For some of us, we already were dealing with osteopenia or osteoporosis before going on estrogen blockers which can increase the risk of either or if already there cause it to progress. A Bone Scan is done with contrast for possible bone metastases throughout the body. For me, 'thanks to a huge family HX of osteoporosis, I had been dealing with with osteopenia for many yrs before IBC DX, but did go on to osteoporosis after Chemo and going onfemara/letrozole. I keep it under control by taking Fosamax/alendronate, just had my DEXA a couple of weeks ago and 'holding constant' after almost 6 yrs.

It has to be remembered that there are many issues/things that come into play as to the appropriate time frame for TX. Yes, for some of us/some types - time is of the essence but for some time is not as critical. There are many different TX protocols with surgery not always the 'best first' option. A good TX plan comes from the Team - not just the Surgeon but also the Chemo Dr and Rads Dr for a complete plan.

As I said - it was 17 days for me from DX to starting neoadjuvant Chemo but I am IBC and days can be critical (some have a less time frame) but I never felt I was being 'rushed' into anything. My Drs were very 'upfront' and honest with me, being sure I understood all we discussed. I never felt 'hurried' because I asked for better explainations. Perhaps they have discussed with her Daughter more than was told to her or you heard. Because of HIPPA signed consent is necessary to discuss issues with a second party. Though they have not gone with me to any of my appts, Hubby and Son are both listed with every Dr I have IF they feel the need to ask questions I can't answer - they never have called any.

You mention your friend is in "fair health - multiple medical issues" - this can mean a lot of different 'things' that could play hugely on the TX available or appropriate ones for QOL. For me I was a very active 'outdoor woman' when DXd at 63. My only 'health issues' were osteopenia and osteo-arthritis in upper back (both for yrs). At 69, I'm still a very active 'outdoor woman' and do any and eveything I want to do - still have osteo-arthritis in upper back, osteoporosis instead of osteopenia.

You may not know 'everything' that is going on and the reasons for medical plans - which may be based on her entire DX of all issues non- BC related.

Again - as it is a Center it would be good for her to see the Nutritionist for input on diet and to see the Nurse Navigator for a wealth of information.

It is great for her to have your support.