advice please on questions/ requests for oncologist.

HopeFaithCourage

Hello ladies. I got pet scan results this morning. I cried all day. Got lots of love. Feel calm and better now but I need advice. I don't want my stage 4 handled like "keeping me comfortable " until the end.

Some background: Nov 2012 dx with 5 cm lump. Triple negative. 1 left armpit node positive. 1 mamallary node positive. Given ACT. Double mastectomy. Residual tumor something like 0.9 cm. Radiation to left chest wall and armpit. Chronic pain. Left arm lymphedema. That took care of 2013.

2014 pain continued. Went back to work. No insurance. No cancercare. Finally at end of 2014 pain had progressed to unbearable in sternum. was in denial and beyond exhausted.

February 2015 dx with cancer in sternum. Radiologist said too dangerous to biopsy. More radiation. Abraxane and carbo had allergic reaction to carbo. About 5 months ago took a chemo break for sons wedding and I w as exhausted. Pain well managed. Cat scan showed no progression and stable disease. I started exercising. Ride my bike now slow and steady up to an hour a day since beginning of august. I've had tissue changes. Complained to mo of neck discomfort. Chest pain. Swelling and tissue changes. Mo still said I w as on my way to remission when I asked him.

Tumor markets times 3 showed an upward trend even though they were only slightly high. I went to mo mad. Took of my shirt. Mind you know one ever examines me anymore. Showed him the rash. Redness. Tight dimpling. Swelling. He was very worried over rash. Took almost a month to get to dermatologist for biopsy. It's cancer in my skin. Not enough tumir in tissue to get further pathology from the sample

Pet scan yesterday. Today was chemo. I went to doc office to ask to speak to his nurse to get results. Doc comes out. And said it has spread. Discussed he will be adding avastan to abraxane next week. He said it will not increase the lemgth of my life but will keep the disease under control. I asked if we will be doing rads again. He said no. ?????

Nodes in neck and throughout thoracic region from neck down to diaphragm. Multiple tumors. Sternum eneveloped. Tumor behind port. No evidence of bone destruction.

Here's the short part of the report . The impression of the radiation doc.

Metastatic disease in the right multiple level 4 nodes. Extensive disease in the neck 6 going to the area of around the manibrium and between the clavicle heads. Subpectorally nodes multiple. Positive Bilateral . Increased activity on or adjacent to left anterior rib image 90 without evidence of rib destruction. Could be in the pleura or the rib. Right axillary adenopathy.

Then it talks about my sternum and at least 4 lesions in my liver. The report is pretty detailed here.

Is it possible that I lit up in chest like a Christmas tree from inflammation from exercise or injury? I'm going to ask for biopsies too. Any advice on other things to request would be greatly appreciated. Besides the obvious pain , mostly discomfort in chest and beck I'm stronger then I've been in two years. I don't want to be treated palliatively. I want to be treated as though we believe remission can happen. Help!

I looked up images and anatomy so I have a pretty good idea of the location of places mentioned. One place is deep in my face in a fossa in there. A fossa is like a naturally occurring hole.

Thank you for reading

xxyzed

I'm not stage 4 but do have extensive experience from my husbands cancer battle.

Firstly your oncologist intends to use different chemo. Statistically it may not extend your life but as an individual neither he nor you can know whether this drug combination will be the one that your cancer doesn't like.

Given that a lot of your cancer is in your breast/ chest area you have probably already received your lifetime dosage. Is it in your head as well? If so they probably want to leave it until you experience symptoms. Ask if this is the case and in the event of symptoms what they would do. Consider whether this would be easier to do now or later. Ask your radiologist the same questions and see where their answers differ.

I don't know how they normally treat cancer in the skin. Do you? If not ask

It seems like you have a lot of pain. Are you able to be referred to a pain specialist. Your decision making abilities would be greatly improved with your pain better managed.

Your oncologist can tell you whether the pet scan Christmas light show could be inflammation but in my experience if the lights match where you're feeling pain and the reports show evidence of disease then that's what it is. Ask if they recommend any other scan types to get more information.

As you are triple negative it would definitely be worth asking about biopsies to see if any of the tumours have changed which could open up more treatment options for you.

HopeFaithCourage

Thank you so much for your reply!

xxyzed

My pleasure. I always feel uncertain responding on stage IV. I'm not but my husband was (non-Hodgkin follicular lymphoma) so I've spent a lot of time asking oncologists questions. I also know it feels nice to know that someone, somewhere cares enough to reply with their experiences when your own head is whirling and uncertain

kaayborg

Hmm. I'm not completely sure I have any great answers either but for what it may be worth. Here's what I would do:

1) Get a second opinion. Whenever anyone hints to me that I'm at the end of treatment options I don't plan on accepting that until I've heard the same from multiple experts.

2) Ask every question you wonder about. Could the lights be from other types of inflammation? I'm also inclined to believe it is the cancer, not exercise/injury but all questions are valid and understanding answers in part of dealing with this disease and making sure you get the best treatment.

3) Find out the next step and the next one. This always makes me feel more in control. So you're adding Avastan. How long before you scan again for its effectiveness? What will they do next if it is not working? What other options were considered in addition to Avastan? Why do they think Avastan is the best choice?

I also am allergic to carboplatin but continue on the drug as it has proven to be very effective and the allergy is controlled by every premed they have on hand for allergies and a 16 titration infusion I am wondering if you tried this or not. If not, I'd ask why not.

I also really like what xxyed said about about statistics. No one can guarantee whether your next chemo will extend your life or not. Count on Avastan to extend your life. When it stops doing its job, count on something else. I know treatments will eventually run out but I'm not convinced you're there yet. Keep seeking the information you need. Let us know what you find out. Each question helps us all.

Moderators

HopeFaithCourage,

We're so sorry for all you're going through. There's so many knowledgeable members here, as you can already see, and you're sure to get some more really great advice and insight soon.

In the meantime, the main Breastcancer.org site has an extensive and very helpful section on Recurrent and Metastatic Breast Cancer, including pages on Recurrent and Metastatic Breast Cancer Treatment Choices, with information on things to consider when planning treatment, and questions to ask your doctor about your diagnosis.

We hope this helps, and that you get some answers and a plan in place soon. Please keep us all posted!

--The Mods

HopeFaithCourage

Oh my gosh you ladies are so awesome. Thank you! I feel so much better. You st get what I'm thinking and feeling. Great advice. Sometimes I really think I'm being irrational and need someone who been there...for example the inflammation and injury question. That was really being intrusive. I am very hopeful but I want to not be in denial. At least not all 5he time. Because then I'm not pursuing answers so I'll get the best care.

Peace and love...off for my slow and steady one hour bike ride loving fall

Neddie

HopeFaithCourage

Xxyzed you offer a unique perspective. A caretaker and love of a person with cancer.

I have an amazing pain doc. That's how I new something was wrong because my pain was previously so well managed we were starting to wean me off a bit and then this all quickly progressed. Crazy how quickly too! Just a matter of a few months...or maybe just pet scan versus cat scan info.

cive

Hi Hope. I'm sending you a link to a MBC guide written by one of our members, Bestbird. I think you may find it informative.

https://community.breastcancer.org/forum/8/topics/831507?post_id=4822353