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Scary Story

Get your hot chocolate and marshmallows and get close to the fire, I’m going to tell you a cautionary tale.

This story could happen to anyone.

Once upon an October, a girl was minding her own business when her right breast started to thrum. It felt like a vibration. It was noticeable but tolerable so she tried to ignore it.

But the thrumming became more insistent and it started to hurt. Not a problem, she just stopped wearing tight bras. Nothing else looked or felt different and besides, she had one of those diagnostic mammograms coming up because her boobs had been a rocky landscape since forever and follow up ultrasounds had become routine. They never found anything so, whatever. 🙄

After about a week, the thrumming and pain went away and she congratulated herself on not hitting the panic button.

But

There was a tiny little bumpy thing where there wasn’t before.

She tried to put it out of her mind and went about her business. But as the date of that diagnostic mammogram came closer, she became a little more aware of that bumpy thing.

The day of the mammogram arrived about a week before Christmas. Off she went, calm as a cucumber until the tech shoved her boob in the machine. Then she started to panic because SHE knew there was something there before the tech did. Sure enough, the mammogram and the ultrasound found something. The radiologist looked serious. The tech put her hand on her shoulder and said “stay strong”.

Ruh-Roh

The radiologist said there’s definitely something there. It’s not like the other things. This thing is different. It’s only 2cm and it’s not in any other part of the breast. So, good catch early. Go see the surgeon.

Wut??

Well, first there was a biopsy. That didn’t happen for two more weeks. That made Christmas a lot trickier to deal with. But the day after New Years Day, she had a biopsy. Then she ignored the calls from the breast center for a week because she had her suspicions.

Eventually, the voicemails piled up and she couldn’t wish them away anymore so she called the nurse navigator back.

Bad news. It’s cancer.

You mean the good kind with the small molecule inhibitors?

Nope. The not as good kind that will require months of chemo. Oh, and it’s very aggressive. We gotta shrink it before it can be removed.

Apparently, that 2cm thing had decided to grow exponentially without even a “by your leave”.

Then came the scans and the echocardiograms and mini operations. She had a chemo port inserted the day they buried her mother who had just died of breast cancer. (Different type, non-hereditary). As Januarys go, it sucked. But there was worse to come on the mother front and with the scans.

They found a funny spot on her lung on her PET scan.

The oncologist wanted a biopsy because it might change the nature of the conversation they would be having.

A week of fear commenced. Lots of Ativan.

Do not take Ativan. It is bad juju.

The oncologist told her the thing in her lung was not metastatic breast cancer. It is a carcinoid. That’s a blob of neuroendocrine tissue that is a cancer wannabe. In this case, it was tiny and very slow growing. Compared to the dragon in the breast, it was a mouse. She would deal with that later.

Meanwhile, the dragon was unfurling quickly. Chemo would commence ASAP.

She lost her hair. No biggie. Her favorite Republican shaved it off one Saturday morning. “Do it!”, she commanded, “I’ve only got 10 minutes before I have to jump online for work.” 10 minutes later, her curly white blonde locks lay in a pile at her feet. She got her first wig that day.

She did the chemo thing without much trouble. She didn’t miss a single day of work.

And the dragon was shrinking. By July, the scans showed it was a tiny shriveled mass of scar tissue. But there two even tinier spots that couldn’t be ruled out as cancer. Even if there was no lymph node involvement, the oncologist and the surgeon couldn’t rule out a recurrence from residual cancer. So, she opted for a mastectomy. That way, she could cut the rest out, avoid radiation and have a 91% 5 year survival rate.

Sounded reasonable.

Just an aside here: there are a lot of people who are scared of chemo. They shouldn’t be. These days, they pump you up full of anti-nausea drugs and steroids so the worst of it turns out to be fatigue, loss of hair everywhere and cratering blood cell counts. Oh, and blisters on the feet. Didn’t expect that. The good thing about chemo is that some dragons quake in fear of taxol and platinum. Such was her dragon. Very, very effective.

So anyway, back to the story. The girl is now waiting for the plastic surgeon to begin to “pump her up” and fill the tissue expander on her chest so she can look balanced in a few months.

She learned her lessons, which are these:

  1. Don’t let your PCP’s office reschedule your diagnostic mammogram a zillion times. Tell them you want to stick to the schedule. There’s a reason why yours may be “diagnostic”. Be reasonably afraid.
  2. Don’t ignore thrumming tits. They are warning you to do something, NOW.
  3. Don’t ignore pain. Same as above. All the stuff you read on the internet about how pain isn’t cancer are wrong. Mebbe it isn’t but don’t assume. Call your nurse navigator back ASAP.
  4. Some cancers will take advantage of your fear to take over your breast. This is a bad thing.
  5. Don’t be afraid of surgery. It’s only a breast. They can rebuild you. They can make it better. They have the technology. And you can get a cool tittoo someday.

The scary story isn’t quite over yet. The girl has to have surgery on her lung to remove the carcinoid. It may be just a wedge resection but it’s still major surgery. This week’s news Rainé Riggs died of a metastatic version of this same thing. The girl’s carcinoid is not aggressive and isn’t going to kill her but if it gets bigger, it’s going to make breathing more challenging some day in the future. So, out it goes.

But that fear is under control.

The girl has only two more concerns.

The first is that other girls with the same breast cancer have very few alternatives if their disease goes metastatic. The girl worked on small molecule drug design for something called kinase inhibitors. There are kinase inhibitors for other cancers at the present time but not for the type of breast cancer she had. There aren’t other receptor inhibitors either like tamoxifen or herceptin. Nope, nothing, nada. People with her type of breast cancer are kinda screwed if it becomes metastatic.

The girl blames the pharmaceutical industry for allowing the financiers to take over and lay off researchers and reduce the portfolio for small molecules while putting all their money on antibody and immunotherapy that isn’t ready for prime time. With a small molecule inhibitor, the girls with metastatic triple negative breast cancer could have something to extend their lives until a real cure comes along. There may be a receptor or kinase in these cancer cells that can be targeted with a small molecule that will keep the dragon from advancing for years. Without one, the dragon will win in a very short time unlike ER+ and HER2+ breast cancers.

If the girl had a access to the literature for a reasonable cost and a license for a modeling package like Schrodinger, she’d design something in her copious free time and donate any patent to a cancer institute. She is unlikely to ever need it but others may benefit.

The other fear is that she will never have another vacation. Vacation days need to be saved for appointments and the mother issue presented a different complication. Let’s just say, you get to know which of your family members you can count on during times like this. That realization has been the most painfully eye-opening. Once you see someone’s callous side, you can’t unsee it.

So, the girl will dream of sandy beaches and buckets of margaritas and hope someday to get to one.

Now, be good, ladies, or the dragon will get you if you don’t watch out.

15 Responses

  1. The dragon visited me twelve years ago, I too learned to listen to my body and what it is telling me. I wish you further good health and a future with margaritas and a lovely warm beach

  2. riverdaughter

    That is a terrible and brave true story you have told. Every woman on earth should read it. And likewise every man who loves them.

    Best,,,

  3. I have found it incredibly uncomfortable when people I love have cancer. I have also found it better to have overcome that discomfit and visit my friend while they are alive instead of living with the regret of not showing up.

    I am so happy that the dragon has receded, and hope all remains well. Your voice is important, and it matters!

  4. Riverdaughter, you can do this! Keep fighting!

  5. The strange part is drug manufacturers target their drugs to do specific tasks. Once they get a favorable result they stop doing clinical trials to see if their drug might help in other ways.

    It is possible that a drug that helps with women’s breast cancer might also help with men’s prostate cancer, but once the drug is found to have a purpose, the clinical trial testing for any other medical benefit is delayed.. Maybe they are trying to extend the drug’s efficacy by using it for one specific treatment so when that treatment becomes public domain they have conducted clinical trials for new treatments with the same drug to see if they get a new patent on a different use for the drug. So instead of one drug having multiple uses, the drug’s benefits are delayed over time. Seems ethically wrong to me.

    • Not exactly. Especially with cancer drugs that are targeted, the target may or may not be specific for a certain cancer. If the target protein is showing up in breast and prostate cancer, there’s a good chance there will be a clinical trial for both.
      Cancer drugs are fast tracked. That is, they are allowed to skip some milestones in order to save lives. They can be more toxic or have more deleterious long term effects. Their efficacy may be marginal. If it buys a patient more time, that fast tracking may be justified.
      I have issues with fast tracking because I think it can be exploited by the unscrupulous.
      But my bigger problem is that there were more small molecule drugs in the pipeline before pharmageddon and now there aren’t. The industry switched to R&D on biologicals, some of which work well and some that don’t work at all yet. (See Alex Trebek). Biologicals have different patent advantages over small molecules and their mechanisms of action are promising. But from what I hear from chemo nurses, it’s the small molecule kinase inhibitors that are coming to market that are extending lives and the industry got rid of many of the people who worked on those. Including me.

    • There’s almost nothing to treat metastatic triple negative breast cancer. It’s one of the reasons I opted for a mastectomy. If a lumpectomy didn’t catch everything and my cancer returned, my treatment options are limited.
      Is that because there are no receptors or targets for TNBC? No, it’s that they haven’t been discovered yet. It’s a relatively rare cancer, heterogenous in nature, with many subtypes. BRCA1 and 2 genes may be involved in a small percentage of TNBC’s. What about the rest of TNBC’s? It’s a mystery wrapped in an enigma. For patients with chemo resistant TNBC there is almost no fallback, unlike other breast cancers. You’re really screwed. It’s aggressive and difficult to treat.

  6. Thank you so much for sharing your story, i am using it as a cautionary tale for a friend who recently complained of a pain in her breast with no palpable lump. She was going to wait for her next Mammo, but now i hope she at least immediately consults with a doc.

    I also wanted to ask about your reference to a “tittoo.” Do you mean you are going to get an areola tattooed on your new breast? Many years ago, that was what they did for a friend who had a mastectomy. IIRC, Angelina got to keep her original areolae. At the time, I thought that was some pretty amazing surgical wizardry.

    • I’m going to get a reconstructed nipple/Areola with tattoo. But what I’m really looking forward to is an artistic tattoo to cover the scars. I’ll post a link to some examples. They’re beautiful.

    • See this link:
      https://www.headcovers.com/blog/mastectomy-tattoos/
      I like #17 but some of the others are amazing as well.

    • The thing with Angelina is her mastectomies is they were profylactic(sp). Her chance of getting cancer was 87% so she got them done ahead of time. That means there wasn’t anything the surgeon had to worry about as far as residual cancer. She was able to save her nipples through a blood supply division. It’s tricky surgery and sometimes doesn’t work very well. I asked my surgeon about it. He wouldn’t have done it for me anyway. My thing was partially under the nipple. I was going to lose it in any case.
      In any case, angelina’s Boobs look pretty perfect but she likely lost sensation in both of them. Plus, she was well endowed before her surgery. I wouldn’t be surprised if she got her implants during her surgery. My breasts are not large. There wasn’t enough tissue to pop in an implant and sew me up. So I have a tissue expander to embiggen it until there’s enough room to put in an implant. It takes a while. A few months at least. In the meantime, my tissue expander will get filled with saline so I won’t look completely unbalanced.

  7. #17 is lovely, i like #1 for a double. It is so wonderful that more is being done to de-stigmatize mastectomies. I remember long ago seeing the scars left on a Russian model (Verushka?) who was brave enough to show publicly what was done to her body. It was terrifying and enlightening.

    RD you are lifting the veil on all of this, it needs to be discussed to save lives and i so appreciate it. Fear, delay and denial kill. There was a young lady where i worked who found a lump and postponed taking cate of it because her wedding plans were consuming her time and her thoughts. She got married, but died shortly thereafter, in her twenties. I only had a lumpectomy, so i consider myself lucky to have a moderately disfigured breast and of course to have had no recurrence in 23 years now.

    Hugs to you and your remarkable Republican companion along this very rough road. Make that dragon toothless and flameless once and for all!

  8. I know someone that has triple negative breast cancer right now. She was in the shower and felt and lump and went to her gynecologist the very next day. They started running tests and since she is young they harvested her eggs. It has been a long and tough road for her but she is doing well and almost done. Before reconstruction you might want to talk to some people that have had it done and some people that have not. A friend of my mother’s said she would not have reconstruction done if she had to do it over because she developed issues due to the reconstructive surgery.

    • Yeah, I’m pretty sure I’m getting reconstruction. The tissue expander is already in there and Tuesday they’re going to start to pump me up.
      I want a breast back.
      The other thing is I tolerate pressure and pain pretty well. I stopped taking my Percocet after three days because I didn’t need it. The doctor’s and nurses are always telling me things are going to be more discomforting than they are. I’m not being brave and I don’t have a high pain threshhold. Labor was excruciating. But chemo and mastectomy? Not nearly as bad as I thought it was going to be. So, I’ll get the implant. If I get a capsule or it becomes unbearable, I’ll address it when the time comes.
      So far, everything is healing nicely. I have no expectations of anything going wrong.

  9. RD, that is an absolutely harrowing story and I am glad that you have come through it with bravery and wisdom.

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