New conflicting diagnosis

jpamcgovern

Hello everyone,

I am helping a very close friend navigate through this very difficult time with her diagnosis. She has asked me to attend her appointments so that I can help be an advocate and another ear to the information she's receiving to help with research.

She was diagnosed with Invasive Ductal Carcinoma on 2/11 but the original doctor (general surgeon) did NOT order labs to determine the type of receptors.

2/17: We got her to a breast surgeon specialist who quickly confirmed the diagnosis, did additional biopsies of her skin and lymph nodes (with correct receptor lab work). She estimated a metastasized stage 2/3 based on what she saw and quickly referred her to an oncologist for chemo.

2/18: At her oncologist visit, the doctor indicated the need to order additional labs for receptors on original biopsy to define treatment plan but confirmed diagnosis from original general surgeon and breast specialist. She ordered a CT, bone scan and we began the waiting period for receptor results.

3/2: Follow-up occurred with breast surgeon who indicated both CT and bone scan were back and clear but they did see abnormal lymph nodes in breast area so she ordered a PET scan. Oncology and breast specialists work as team but are separate practices. Receptor lab work on both biopsies not back yet.

3/9: Oncology follow-up to review PET scan and receptor (1^st and 2^nd biopsy) results.

• 1^st Biopsy of mass in breast= ER+/PR+ and HER2 Positive results
• 2^nd Biopsy of skin above breast mass and lymph nodes= ER+/PR+ and HER2 NEGATIVE results
• PET scan shows spots on both her sacrum (pelivs) and in her liver

The oncologist said both of these results are very odd and unusual and spoke with radiologist 3 times to ensure the PET results were correct.

She said the PET scans usually do not pick up such small spots and that if they were there, the original CT/bone scans should have picked them up and no chance of them getting there between the CT/bone and PET scans. She also said that the HER2 positive and negative results are confusing.

They have ordered a bone biopsy for 3/14.

The oncologist very briefly and almost as an aside threw out that while incurable, if the bone biopsy is positive, there is hope.

Our heads are spinning. We don't know what to think or what questions to ask but here's what I was able to get from the doctor before she rushed out:

• It's a 50/50 change of it having gone to the bone.
• If bone biopsy is positive for cancer, she will do a minimum of 6 mos chemo: Taxotere/Herceptin/Perjeta with Perjeta and Herceptin continuing for a long time/life.
• If bone biopsy is negative, she will do a 4-6 mos treatment of Taxotere/Herceptin/Perjeta/Carboplatin with Herceptin for at least a year
• They are treating the cancer as HER2 positive because she said the benefits outweigh the risk but didn't go into the risks.

She said that if the bone biopsy comes back as negative they are going to assume the liver is negative and if the bone biopsy is positive they are going to assume the liver is positive. She said there is no easy way to get a liver biopsy and it would likely be inconclusive.

She is scheduled to start one or the other of her Chemo treatments options on 3/21.

Sigh. Breath.

Has anyone experienced this type of conflicting diagnosis? Does anyone have any suggestion on questions we should be asking? Should she just wait for the bone biopsy before diving into the details of the treatment?

I'm concerned that the breast surgeon originally (prior to the PET findings) said that it was great news it's not in the bone because at the point the treatment approach would be different and no chemo and "stage 4" all = BAD but with the PET results the oncologist is offering the same chemo approach (minus Carboplatin).

She does not want to second-guess the oncologist's approach but feels like she doesn't really have a good picture of her situation at this point. She's also very concerned about yet another biopsy with another waiting period for results. She's is over a month out from her original diagnosis.

Any suggestions or help would be greatly appreciated. She has 2 little girls and we want to make sure she is able to have quality time with them.

ElaineTherese

Hi!

Just some quick thoughts.....

Your concern about the breast surgeon's statement that "the treatment approach would be different and no chemo" if your friend was Stage 4 --- Yes, Stage 4 breast cancer is often treated different than early stage breast cancer. For example, some surgeons don't worry about a mastectomy or a lumpectomy at that point (though some do). Also, some Stage 4 ladies are just prescribed hormonal therapy in the hopes that it will starve the cancer of the estrogen that is feeding the cancer. Their oncologists will save chemo for when the hormonal therapy has run out of gas. However, your friend's case is different because the mass seems to be HER2+. HER2+ cancer is very aggressive, but researchers have discovered targeted therapies like Herceptin and Perjeta to lessen the impact of HER2 over-expression. Herceptin is not chemo, but it is initially given with a chemo and then by itself.

Is it possible that some of your friend's cancer is HER2+, and some of it is HER2-? Cancer does mutate. One's primary cancer might have one profile, but over time, it might alter that profile.

One last thought about PET scans: they often produce false positives. I've had three PET scans, and all three showed "something" on my right hip. But, it didn't show up on a CT scan or an MRI, so my oncologist is treating it as a false positive.

KBeee

it is possible for different tumors to have different profiles. Either way, a second opinion is warranted; they can redo pathology on all of the tumors. Hoping the bone biopsy is negative

jpamcgovern

Thank you both for your input. We are hoping for the best with the bone biopsy.

My concern about the conflicting statement is that the breast surgeon said Chemo for stage 4 is not likely (and the rationale makes sense) but chemo is the path the oncologist is recommending even if it's in the bone/stage 4. Ultimately she will do what her oncologist recommends but yes, it's all so confusing and overwhelming.

I really appreciate your input and help. One other question - In the past, she mentioned that she liked the pictures I took of her girls with her girls when our kids were babies. Given how raw all this information is right now, would it be helpful or hurtful to offer to take more pictures of them together? Her chemo starts on 3/21 and I am extremely sensitive to offering this as an option. If this question is best put on another thread, I can move it.

I want to help her in whatever way I can and it seems like I can't just make it all go away.

Thank you again.

leggo

Hi jpa. First, you're an awesome friend!...and I'm so sorry your friend is dealing with this. I can certainly understand the confusion regarding chemo/no chemo for Stage IV. I was originally diagnosed stage III in 1996. Mets in 2006. That's when I read that all of the ER/PR+ were being treated with hormonals as first line of treatment. My onc suggested chemo and I was really confused by that and was concerned that I was going to get chemo when it seemed nobody else was. Ultimately, I asked the onc to try a hormonal treatment first (based soley on what I'd read here) and he disagreed, but ultimately gave in. I promptly progressed. Should have listened to my onc. I don't know that any of this is helpful, but I thought I'd give you my experience just to let you know that things you read here require further research sometimes, especially when dealing with a life or death decision. I learned that the hard way. Best wishes to you both.

ElaineTherese

Hi!

You know your friend better than we do. But, I would hold off on additional pictures for right now. Mets are treatable, and women can live for years with them. (One BCO member, longtermsurvivor, has lived with mets for 25 years.) Unless your friend progresses rapidly, there will be time to share precious memories with one another. Right now, I'd just keep an upbeat attitude and help her keep track of the results of her appointments/scans, as you are already doing. And, leggo is right. The treatment of mets is an art and not a science. MOs have a wide range of weapons that they can deploy against them, and their treatment is often trial and error. That isn't to say that there aren't standard treatments; Herceptin and Perjeta are standard treatments for HER2+ cancer. If you're interested in learning more about the treatment of mets, I'd advise you to get a copy of Bestbird's guide to treating Stage IV breast cancer. Just search for Bestbird through the search engine, and you'll find the threads where she explains how you can get a free copy of her guide.

Best wishes, and thanks for being such an awesome friend!

jpamcgovern

Thank you again for your input. I will keep posted.

My thoughts are with everyone in this community.

dtad

Wow what an awesome friend you are.... IMO she should get a second opinion at a university based teaching hospital. Good luck. She's very lucky to have you.

dtad

Wow what an awesome friend you are.... IMO she should get a second opinion at a university based teaching hospital. Good luck. She's very lucky to have you.

GoldenGirls

My mother had a hard time getting an official diagnosis when her cancer metastasized 3 years ago. She had 3 negative biopsies but her oncologist persisted until he got a definitive answer. CT scan in her case showed a couple of large bone mets and enlarged lymph nodes. Her bone scan was completely clear. An MRI showed other mets that were not picked up on the CT.

CT scans, MRI, and bone scans are not reliable for bone mets. Some types of bone mets appear better on some scans than others and if they're very small they're not likely to be seen. My mom's medical team to this day relies more on her symptoms than just scans. They don't use PET here, unfortunately.

pajim

I would like to 3rd the idea of a second opinion. Get copies of all the scans and biopsy results and take them to a major cancer center. They can offer an opinion and treatment plan. She can have the treatment plan carried out locally.

The HER2+/- is definitely possible. Not all cancer cells or masses are the same. Some could easily be positive, some negative.

It's my understanding that, regardless of whether the liver and bone are involved, she would get the same treatments. Herceptin/Perjeta/Taxol and maybe carbo. Carbo is a nasty drug. They give it to early stage women in hopes of a cure. Stage 4 there isn't a cure so they hold that back.