Stage IV - Still have breast(s) - changes in tumor

AnimalCrackers

I was diagnosed Stage IV de novo with bone mets in June of 2014 at the age of 52. I still have my breasts and I still have the tumor. It has been difficult to assess how many others on this forum are in the same boat so to speak. I get the sense that there aren't that many but starting this topic is one way to find out. If you are in my boat then you know that there are issues that are specific to our situation and I'm hoping some of you would be willing to share your experiences.

My main reason for opening this discussion is to find out if you notice changes in your tumor, in the way it looks and feels, and if your MO uses that to help determine how well you are responding to treatment. I'm also wondering if any of you feel pain in your tumor. When I was first diagnosed the tumor wasn't really visually noticeable other than a slight indentation in my left breast. I could certainly feel it under the skin. It was very hard and long. I often describe it as feeling like a ruler under the breast tissue. After being on Tamoxifen for 15 months it shrunk and softened significantly but it also became more visibly noticeable. At one point it looked like a small pintuck button on a pillow or sofa cushion and a little reddish. Also while on Tamoxifen I would get pain in the tumor which was difficult to describe and upsetting enough to prompt several conversations with my MO and BS about having it removed. Then I noticed it getting hard again. It wasn't growing but the small button that had become soft was feeling like a a pebble. That correlated with slight progression in a met in my spine and so it was time for a new treatment. After 18 months on Tamoxifen I moved to Ibrance\Letrozole. I have been on Ibrance\Letrozole for 9 months now and the tumor softened again considerably and my last two sets of scans came back stable. However, I am now noticing the tumor increasing in size but not really getting harder. This is opposite of what I observed toward the end of my Tamoxifen treatment. The tumor got harder but not larger. This time it is getting larger but not harder. I am also beginning to feel pain in the tumor again which had pretty much disappeared when I changed treatments.

I am very interested to see how many of you are experiencing anything like this and what kinds of conversations you have had with your MOs about it.

Thanks.

Cathy

alnhaysmom

I have a very similar situation to you. I was diagnosed as stage IV in January. I am Er+, PR+, HER2- with mets to my bones and lung. I also still have my breast and tumor. At diagnosis my tumor was quite large. It was round and hard like a baseball. It was tender and felt warm and inflamed at times and had some redness. I received AC/T chemo that had a good response and the tumor softened and shrunk to a squishy golfball size. While on the taxol my tumor again got tender and harder and grew. My scans confirmed that and I switched to a clinical trial of Ribociclib and tamoxifen. My tumor again softened and shrunk but after 2 months my scans showed an increase in bone mets. MO wasn't sure if it's progression or a flare up but switched me to Ibrance& Letrezole. I'm only 2 weeks into this treatment, but the tumor change is drastic. It's down to gum ball size and its very soft and moveable. I had a followup pet scan today. HOping the results show good news

zarovka

Hi Ladies -

I was diagnosed in January, at 50, with ERPR+ HER2- MBC with metastasis to the liver and bone. All the lymph nodes in my left armpit were impacted as well. I have not had surgery or radiation to remove the breast or tumors. So we're pretty similar, but I am earlier in the process.

I started letrozol and ibrance in january. In July the CT could no longer pick up metastasis. The primary tumor had shrunk form 4 cm to 2 cm and lymph nodes had mostly resolved. I will get scanned again in November. So far so good. I can't feel any tumors for sure any more. However, I have to say that two oncologists disagreed on which lump was my tumor (I have benign chunks as well) and I don't really like looking for it.

I feel a lot of pain and burning in my left breast and armpit. I don't believe it is the tumor, but rather the area around it. I am pretty convinced the tumors, when I had them, were without sensation. The pain was associated with the tumors shrinking, I've come to regard it as the action of medication I am taking and healing. I have lesser but similar pain in the right breast where there is no cancer, so that gives me the sense that it is some kind of inflammation associated with healing or the (massive) hormone changes going on in my body due to the hormone suppression. I also feel that burning when I get high doses of Alpha Lipoic Acid so, again, I associate with the action of medication.

I work with two ladies who do lymphatic drainage. I ask them to concentrate on the breast and armpit as I believe the impacted lymph nodes effect the functioning of the lymphatic system in my breast and contribute to the burning and pain I feel in that area. That does help a lot.

Soft and/or moveable is generally a sign of necrotic or non-cancerous tissue. It sounds like both you ladies are doing well.

There are a lot issues specific to ladies diagnosed de novo who don't have surgery initially, etc. I am glad you opened up this conversation.

>Z<

AnimalCrackers

alnhaysmom - Thanks for sharing your experience. So it sounds like your MO does use the changes in your tumor as a guide to how responsive your cancer is to the treatments. It is amazing how quickly your cancer responded to the ibrance\letrozole. That is fantastic. My cancer responded similarly. I noticed the softening and "squishiness" (I used the more highly technical term "smooshy') early on too. Please let us know what the pet scan shows next week. Hoping to see that correlation between squishy tumor and stable mets! I'm curious (mostly out of ignorance) as to why you started treatment with chemo since your cancer is hormone receptor positive? Was it due to the lung involvement? Was the idea to zap the lung mets into oblivion?

>Z< - Thanks for contributing! I didn't realize you were in this boat too. I never felt any pain in my tumor until after I started treatment. I wish I had because I would have found it sooner. So I agree that the pain is an effect of the treatment. I wouldn't characterize the pain I feel as a burning sensation. It's more of a shooting/sharp pain that comes in waves. It is not constant and at this point it has been tolerable without the need for any pain management. I do not feel any pain whatsoever in my "non cancerous" breast. I also understand that the softening is indicative of necrotic or non-cancerous tissue. But I wonder about the pain when it coincides with the growth of the tumor or hardening of the tumor. Also the location of my tumor is very conspicuous. I don't have to look for it. It's in my face every day. The tumor pulls down on the skin so I have this reddish pucker right around 11 o'clock on my breast. X marks the spot - except there's no hidden treasure there - unless you count the tiny titanium clip that was inserted during the biopsy. So I see it and I touch it multiple times a day. Talk about breast cancer awareness! You've mentioned the lymphatic drainage in posts under other topics (perhaps the Ibrance thread or the bone mets thread) but I wasn't clear on why you had that done. I don't have any lymph node involvement but I'm interested in what benefit this procedure offers. Is it only for people with lymph node involvement? Is there a risk for lymphedema?

Thanks again for your input ladies!

Cathy

zarovka

Sometimes the pain could be described as "a sharp shooting pain that comes in waves." Pain is hard to describe or even remember when I am not actively in pain. It's never that bad that I really need to manage it.

The lymphatic system has multiple interrelated functions: It is responsible for the removal of interstitial fluid from tissues. It transports white blood cells to and from the lymph nodes into the bones. When I was trying to figure out how to improve my odds, it seemed like it would be good to have the lymphatic working well. I am flooding myself with toxic drugs and provoking my body to launch an attack on the tumors.

The lymphatic system also absorbs and transports fatty acids and fats as chyle from the digestive system. One of the alternative treatments I pursue is an oral fatty acid.

My lymph nodes are impacted by cancer and I do have measurable, although not visible, lymphademia. It's very slight. However, even without the lymphedemia I would do the lymphatic drainage. I see a marked reduction in side effects when I do the lymphedemia. I think helps my body clear the drug metabolites from the body and generally keeps me well through all the crazy changes to my system with both the cancer and the drugs.

I can go on and on about the lymphatic system, which fascinates mem but everything I read suggests you need to support it during cancer treatment. I'm not doing immunotherapy, but one of the things they have to control is the toxicity that builds up when the tumors break down really fast and flood the body. It can kill people. I don't have a huge tumor load and my tumors didn't break down that fast, but the movement of waste away from the cancerous areas is a big issue and the lymphatic system plays a big role.

It was my idea to do lymphatic drainage because it is not strictly indicated if your lymph nodes have not been removed, but when I brought it up, my oncologist strongly supported it and wrote a letter saying I needed it so it would be covered by insurance.

>Z<

alnhaysmom

Yes Animalcrackers, we started with chemo because at the time I had a massive pleural effusion from the lung mets with trouble breathing, and because I'm only 37. They wanted to go the most aggressive route to get it under control. I had a Pleurex drain in my lung, my port, and started chemo within a couple days. Within a 2-3 weeks the chemo kicked in and I had the drain removed. I wish we would have skipped the taxol and went right to this treatment. My tumor sounds like it's even in the same area as yours with the "11:00 pucker." It makes it somewhat hard to miss!

All that information from Zarovka will have me researching lymphatic drainage now too

zarovka

Chemo was considered in my case because I had seven liver mets, a possible bone met and extensive lymph node involvement. Chemo is indicated with ER+ cancer when metastasis is considered "extensive". There is no real definition of extensive. Tumor board decided I could go either with chemo or hormonal treatment, so I guess my case is the boarder between limited metastasis and extensive.

If I had gone with chemo, I would have gone on hormonal treatments once the tumors were reduced or controlled or whatever the goal was. I decided to go with letrozol and ibrance as a first line treatment. Doing well.

>Z<

alnhaysmom

I'm curious now about the lymphatic drainage. Is this through a Dr or is it considered more of a holistic or alternative approach? If it is a traditional Dr. what type? It's definitely sounds like something worth looking into as I also have several lymph nodes involved

zarovka

Lymphatic drainage is both a standard medical treatment and a holistic treatment. From a medical perspective, lymph gets backed up when some part of the lymphatic system has been compromised. Lymphatic drainage is a standard treatment when you have actually had lymph nodes removed and your arm swells up with lymph. From a holistic perspective, you need to help moving lymph around even without obvious impairment to the lymphatic system if you have toxicity or you are fighting an illness. (ie. drugs, cancer)

My doctor prescribed it even though I had no lymph nodes removed and no obvious swelling. Although unusual, it was still picked up by insurance. My arm did show some swelling when you measured it. I did about 15 sessions with the hospital therapist, but couldn't keep up because of the distance and time. I decided to continue closer to home with someone who works entirely outside the standard medical care. She is better and closer. I don't seem to need as many treatments with her approach.

It is something to think about. I've tried many things, a lot of them didn't help me though they might help others. It can go either way. For me the lymphatic drainage is one thing that consistently helps with side effects and overall well being. May do nothing for others, but there is enough logic to it to make it worth a try.

>Z<

alnhaysmom

I got my scan results back today and they were MUCH BETTER than I was expecting. I just had scans 2 1/2 weeks ago, but since we were unsure if I was having rapid progression or a flare up, they wanted to recheck it. On my last scans I had spots all over.... Large breast tumor, spots in my lungs, several lymph nodes, my sternum, my spine, ribs, shoulder and hip socket. This scan only showed a small spot in my lung that is no longer hyper-metabolic, a decreasing spot in my hip, and the breast tumor is 1/2 the size it was. I'm finally feeling like it's moving in the right direction!

zarovka

ainhaysmom - Awesome. I am glad your doctor is aware of the flare reaction as it may have saved your life. It's quite common and I think many people change treatments too early. I won't be changing treatments without two confirmatory scans at least 8 weeks apart.

I am so very glad to hear about your fantastic scan. Thanks for letting us know!

>Z<