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Topic: Pain and when it’s a concern

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Dec 8, 2021 05:30AM

mnsotamom74 wrote:

good morning! I haven’t posted in quite some time.. I can’t go on here or other bc sites too often.. I have dealt with anxiety since my teenage years, bc multiplied that anxiety x ten.

So a little update. I switched to a different oncologist after talking with some friends and family members who have had bc. I definitely liked my original onco and I thought having scans every 3 months was great. He orders them for all his patients.. across the board.. it doesn’t matter what kind of cancer or stage, it’s every 3 months for 2 years, every 4 months for one year and every six months for two years and once a year after that. I also had to do monthly blood work. Well, I thought all of this is normal, then I start talking to other women and they cannot believe I’m having pet scans like this and how can my insurance approve for scans that are just done to look for cancer without any reason except the fact I had cancer. My insurance was not having it. They covered well the first 18 months and after that they barely covered any of it and I have astronomical bills because of it 😢

So, I switched to a MD oncologist (my previous one was not an MD so had to have a NP for prescriptions)

My new oncologist was flabbergasted by all the scans and blood tests. He said that they don’t do scans unless they are checking something specific out that is a concern. Blood work is done the first year out but after that it’s left to your regular provider.

He said there was zero reason for all these scans and that there is danger in using scans like this but he acknowledged some oncologists do them, but he figured my insurance wasn’t covering them anymore.

So, his philosophy is I’ll be seen every six months (unless a concern arises of course) he does a full exam (not gynecological tho) and no blood work unless there is a concern.

This sounded logical to me and I’ve seen him twice and see him again in February.

So now I’ve gone major off topic, sorry, just wanted to give a reference of this last year.

I’m on generic arimidex as my bc was estrogen, progesterone positive. I was dcis stage 2b but my new oncologist said he would have put me at stage 1 but the size of my tumor was what brought me to stage2.

I had no lymph node involved and double mastectomy with reconstruction and my ovaries removed.

So this leads me to pain. I have always had pain. I’ve had migraines since I was 7 years old and I’ve been having back, hip, shoulder pain since my teens.

Pain no longer feels like it was before bc. Now when I have pain that lasts more than 24 hours? I’m in a dark mood, crying, scared, thinking it’s the worst.

My new oncologist is very clear on pain. He tells me to mark it on the calendar and if it gets worse, nothing helps it, it won’t go away with chiropractic work, massage, ice/heat, ibuprofen, etc. then if it’s worsening and nothing is helping? Two weeks and then they scan.

At first this made sense to me.. well, I’m day 3 with back, hip, leg pain and it comes and goes throughout the day.. and I’m a mess.

I don’t know if I should now try for a 3rd opinion with a new oncologist? My oncologist also doesn’t do the blood test tumor marker and I really wish he did. I like him, when I see him in person he is amazing at calming me down.. it’s in the months of not seeing him. I’m always scared. I’m always waiting for it to come back. I would appreciate some opinions on what you would do in my position. I just really need to hear from women who get the fear and what works for you? Anyway, I’m sorry I have absolutely rambled like crazy.

I appreciate any comments:

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/4/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Dec 8, 2021 05:41AM MountainMia wrote:

Hi. I'm sorry you're going through this. I don't think getting a 3rd oncology opinion is going to be helpful here. The one you currently have sounds like they work on a much more standard plan than the 1st one. It seems to me all the follow-up with the 1st one was feeding your anxiety, and now being cut loose from that schedule is feeding it a different way. But the core problem is the anxiety.

Blood tumor markers as they currently stand are not reliable enough to be used as a standard of care test for most people. Waiting 2 weeks IS a good plan for checking for recurrence or progression. So this MO is doing the right things.

I recommend with all compassion that you talk with your doctor about getting treated for the anxiety. There are medications and there are talk treatments, such as CBT cognitive behavioral therapy. There is also MBSR, Mindfulness Based Stress Reduction. Here is a link to University of Minnesota's program in MBSR.

https://www.csh.umn.edu/MBSR

Best wishes to you.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 8, 2021 05:45AM mnsotamom74 wrote:

thank you so much for your response. I will definitely check out the link. I so appreciate having someone who’s been through bc give me their opinion, it most definitely is helpful when it comes from people who have been through this process themselves.

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/4/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Dec 8, 2021 06:00AM MountainMia wrote:

Yep, I've been through with breast cancer (though we're never really through, are we?) and I've been through MBSR for anxiety. When I did it, it was an 8-week course. People in the group had a wide variety of concerns. Some were grieving, some had anger/stress issues, some had anxiety... My issue was anxiety, not related to cancer. MBSR gave me a lot of tools to work with.

But also, multiple approaches might be best for you (you and your doctor/s can decide that). And for sure if you try one thing and it doesn't work for you, keep trying. It's worth it.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Dec 8, 2021 07:47AM exbrnxgrl wrote:

I will echo what mountain mia wrote. Your first mo (you said he was not an md? ) did you a great disservice and wildly deviated from standard of care. PET scans are great, when needed, but are ridiculously expensive (hence issues with insurance coverage) and expose you to much higher levels of radiation than an X-ray ( 25 mSv vs. 0.1 mSv). I am stage IV and although I had more frequent scans initially, now have only annual scans. Tumor markers? They are not considered reliable for many and it is common for docs not to use the. My mo has never used tumor markers (I have been NEAD for 10 years).

As for pain, the two week rule is pretty standard. A third opinion? If it comforts you, I suppose you could seek one but mo #2 seems to have a good plan for you without incredibly unneeded radiation exposure and the stress that frequent testing causing , especially for lower stage bc. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Dec 8, 2021 08:33AM Beesie wrote:

mnsotamom,

Your pain sounds a lot like mine. Back, hip, leg pain. For me, add neck and shoulders and sometimes arms. Do you know what has caused the back, hip and shoulder pain that you've had since your teens? I have osteoarthritis all over the place, mostly mild but moderate around my neck. My spine is full of it. Because the spine affects every part of the body, I get on and off pain everywhere. 2 1/2 years ago I started on an AI, and I worried about how I would distinguish my OA pain from pain that develops from the AI or, more concerning, pain that could be the result of the development of mets.

What I've discovered is that I really can't distinguish between my OA pain and any pain that comes from the AI. Since I've been on the AI, I certainly have increased pain in some areas and new pain in other areas. However the pattern remains pretty consistent to what it's always been, which is that the pain tends to come and go, and over time it moves around. When I say that it comes and goes, sometimes it might be over the course of a day but often I have pain that is extremely bad for a several days before it eases up, or I might have moderate but noticeable pain in one area for 10 days or more. There are some spots where I pretty much always have pain, such as my neck & shoulders - but I know my OA is worse there. And even with my neck & shoulders, the pain ebbs and flows - sometimes really bad, other times it's present but much less noticeable.

I know that I could be missing something, and that does worry me sometimes, but to my understanding, metastatic pain will not follow this same pattern. Metastatic pain gets worse over time, it doesn't ease up. Maybe initially it comes and goes, but over time it will become more persistent and won't go away. So to keep myself from going crazy, I take a long term view of any pain I have - I monitor the pattern and as long as I get some periods of relief and the pain doesn't always come back worse when it returns, I assume that it's just arthritis pain or pain from the AI. In talking with both my MO and my PCP, they agree with this approach - in fact I just had this discussion with my PCP last week. Interestingly, while I'd assumed that most of my pain is from my OA, as I described it to my MO, she thought it's from the AI. I know she's at least partly right because I realize that a lot of my leg pain appears to be muscular, and muscular pain is common with AIs. (Lack of estrogen can lead to muscle cramps and poor circulation, both of which can cause leg pain.)

My MO does not do blood work but when I commented to her earlier this year that I had hip pain that was new since my BC diagnosis, and that it recently had become more persistent, she immediately ordered an x-ray. Turned out to be arthritis (but that x-ray led to a an unrelated incidental finding which led to other imaging which led to many more incidental findings, but that's another story). So she seems to follow the same guidelines as your MO - if pain is new and persistent for a period of time (the 2 week rule is common), then get it checked out.

Having said all that, are there times when I am experiencing pain and I start to worry that it could be mets? Absolutely. But then I remind myself that I have had pain for decades, that I have OA that is getting worse as I get older, that I am getting older and every human starts to get new pains and worse pains as they age, and I'm on an AI, which can cause exactly the sort of pains that I am experiencing. So I shove 'mets' into the back of my mind as the last and least likely possibility, and I monitor the pain until it eases up, which so far, it always has. And when pain returns to that area, which it always does, I remember "yeah, I had that pain before and then eventually it eased up" and I watch for the same pattern.

Since you have almost constant pain - not all that unusual for someone on an AI - what you need to do is find the thought process & approach that works for you, in terms of how your talk yourself out of thinking "mets!!" every time some pain flairs up. It's important to remain vigilant - if a new pain becomes progressively worse and more persistent over 2 months, you don't want to ignore it - but you can't live being always scared. Talk to your new MO, and come up with an approach that that he agrees with too.

A small side note. Since your diagnosis included IDC and DCIS, it would be clearer and more accurate if you state it to be 'IDC Stage IIB', not 'DCIS Stage IIB'. DCIS is the lesser condition, and DCIS is always Stage 0. When someone has both DCIS and an invasive breast cancer (a very common combination), the DCIS has to be removed but otherwise can be ignored - and because it's non-invasive, it's not part of the staging. A lot of women on this site who have pure DCIS get really worried when they see a post where someone says that had DCIS that's a higher stage, because they think their diagnosis could be wrong. It has to be explained that no, the other person's diagnosis was actually IDC, not DCIS. DCIS is only Stage 0.

As for your staging, your new MO is correct. As of 2018 a second type of staging was added. Based on the original (and still used) Anatomical TNM staging, the stage of someone with a 3cm (T2 sized tumor, 2cm - 5cm), who is node negative would be Stage IIA. But using the new Pathological Prognostic staging, that same diagnosis, if it is ER+/PR+/HER2- and grade 2, will be Stage IA. So despite the size of your tumor, which bumps you to Stage II, based on the prognosis of your diagnosis, you are Stage IA. See the two staging charts here:

Hope this helps!



Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Dec 8, 2021 08:36AM mnsotamom74 wrote:

thank you so much! I needed some voices of reason to sink through my thick head. Everything you’ve said is exactly what I needed to hear. I know I need to seek help so I don’t spend the time I’m given on this earth, worried, anxious and not present to my family, which is one of my adult sons frustration with me, when I enter into worry about me mode, I’m not available to listen to anything or anyone because I get so engulfed in my own fears.

Thank you so very much

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/4/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Dec 8, 2021 08:49AM mnsotamom74 wrote:

Wow! Thank you so much Beesie! You’re a wealth of knowledge!! I definitely have more pain since being thrown into menopause and the AI

My oncologist has suggested I take a two week break and see if it eases up, then he said we can try a different AI, I haven’t tried it yet but it might be worth it. I just see so many women who have tried them all and they all seem to come with disagreeable side effects one way or another. Thank you for explaining the staging and correct terminology. If I don’t have it right in front of me, I never write it down correctly, my brain is mush the last three years, so frustrating how I can remember stuff from years ago, but anything I need to remember immediately is absolutely terrible for me.

I really like the approach that you take for gauging your pain and when to get it checked out, that makes so much sense and I’m going to talk with my MO about implementing something like this for me:

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (IHC) Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/4/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)

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