The Forum support

We're lucky to be on the Hodge's forum. This is the best post I've read a few days ago:


Update: How do you know that you haven’t relapsed?
Note: This applies to classical Hodgkin’s, not LPHD.

This is a new, updated post of my previous post, formatted for the new site and a few fixes. I hope you find this helpful.

To those who have recently finished treatment:
Trust that your treatment was right and that you’ll be one of the vast majority of people that are cured the first time. Of course, there are no guarantees in this cancer world, but now it’s time to get on with life and not think about this all the time. If this forum makes you too anxious, take a break and read no further!

If you’re concerned about a relapse, you have the right to get answers to your questions. Ask your doctor for a complete and detailed explanation of why (symptom or scan) is something to worry about or not to worry about. Very often, an oncologist will tell us that things are fine, but without a detailed explanation, we feel unsure of their reassurance. Oncologists seem to be particularly busy but don’t let them run out of the room until you have the information you need and don’t be shy about calling or emailing later if you still have questions.

In General
The majority of people who are treated for Hodgkin’s are cured the first time.

The chance of a relapse is very remote, especially for those with early-stage disease.

Relapses are usually very obvious and not a subtle change on a scan or a flu-like feeling for a few days. Each and every one of Adrienne’s relapses included multiple nodes over 2 cm (and as big as 5 cm) that were strongly positive on PET scans, with SUVs ranging from 7 to 28. This is very typical.

Scans
It is critical that you have a radiologist that has experience with lymphoma. It's preferable to have scans on the same machine at the same institution with the same radiologists. That way, you can be sure that they're comparing the same things and are familiar with the clinical picture of lymphoma relapses. Keep in mind that CT scans take slices every 5 mm so a change of 1-3 mm is probably due to a different slice and doesn't represent a real change. A relapse would likely reflect multiple enlarged nodes on CT (over 1.5-2 cm) and would have significant uptake on the PET scan (at least 5 or 6 or strongly positive). A concerning node would reflect both uptake on a PET scan and enlarged nodes on a CT. The beauty of the PET/CT is that they can easily line up the nodes.

If you have only CTs, if it isn’t growing from one scan to the next, you can be pretty sure it isn't cancer, even if a node is slightly enlarged. That's why it's important to have a good radiologist who will compare each scan to the previous ones, looking for a change. It's the changes that are important. You will often see all kinds of things mentioned, called incidental findings. Most have nothing to do with Hodgkin’s.

PET scans are notorious for false positives. Personally, I think false positives come from radiologists who don’t know how to correctly interpret the results or who are trying to cover themselves by mentioning any and every little thing. Brown fat is not the Hodge, nor is thymic rebound. If you have uptake in the thymus and no corresponding enlargement on a CT, it’s thymic rebound and a good radiologist will know this.

If you have uptake in a node where there was no disease previously, the chance of a relapse is very slim. Very often, especially in the first year after treatment, people have minor uptake in axillary nodes, inguinal nodes, or in the neck. These are almost always caused by infection, have very low SUVs (1-5) on a PET scan, and are under 2 cm, if they’re enlarged at all.

B Symptoms
If you didn’t have B symptoms at diagnosis, it is highly unlikely that you would have B symptoms on relapse. So if you have a fever or night sweats or achy feelings for a few days, it's likely that you have a virus or other infection, not a relapse. The only exception is itching, which can occur on relapse in people who didn't have this symptom to begin with (see itching below).

If you’ve had a clean scan within the last 90 days, whatever symptoms you have are unlikely to be B symptoms. Real B symptoms are indicative of widespread disease, and Hodgkin’s just doesn’t grow that fast. When I say widespread, I mean tumors in the 5-10 cm range and/or disease in the marrow.

Remember that people who’ve had Hodgkin’s get ordinary things: colds, flu, dry skin, etc. If you have cold or flu symptoms, you probably have a cold or flu, not a relapse of Hodgkin's. Wait at least 2 weeks of symptoms before calling your oncologist (see your PCP if you need medication for your symptoms).

Night sweats
Night sweats from Hodgkin’s are pajama- and sheet-drenching and not once in a while, but every single night or during a nap. A small night sweat here or there is much more likely to be a hormonal issue than it is Hodgkin’s, especially in women over 40. (I’m 49. I get them all the time.)

If you’re on treatment, if you’ve finished treatment within a few months, or if the weather is getting warmer, mild night sweats are normal. It turns out that 40% of people experience night sweats regularly, but clearly, 40% of people don't have lymphoma.

Fevers
Hodgkin's fevers are typically daily, often at the same time each day, if not constant, and are low grade, in the 99-101 range. Higher fevers are indicative of infection. Try alternating Tylenol and Ibuprofen every 4-6 hours, which will be effective if you have an infection. If the fevers persist beyond 2 weeks, try an Aleve/Naproxen each morning, and if this resolves the fevers, a relapse is more likely.

Weight loss/gain
You can expect to lose some of the weight gained on steroids within 6 months of coming off treatment. (I know, I know, sometimes people can’t lose the weight.) You only need to worry about weight loss if it’s more than 10% without trying and in excess of the weight you gained on treatment. Weight gain is never an issue.

Itching
The Hodge itch is a deep itch that you can’t scratch away. If you didn’t have the Hodge itch before diagnosis, it’s unlikely that any itching after treatment is due to a recurrence. There are a million things that cause itching and don’t forget that chemo dries out skin and radiation damages it, both of which can lead to itching.

Blood Work
There is little in blood work that would point to a relapse without other symptoms. You should be getting regular checkups (usually every 3-6 months) with routine bloodwork. The major purpose is to make sure your counts are returning to normal after therapy and most people's counts return to normal in 3-6 months. Sometimes it takes longer, especially in slightly older patients, but there is still no cause for concern.

There are a number of tests that look at inflammation: ESR, LDH, CRP. None of these are specific to lymphoma and are more commonly used with autoimmune diseases. If you have a cold or flu, these numbers will rise. Your doctor should only become concerned if any of these numbers is highly elevated (2-5 times normal). Keep in mind that "normal" is a reference range for the population at large and a number outside the reference range doesn't automatically signal a problem. I'm most familiar with ESR and, without symptoms, a doctor should be concerned if this number is over 90.

Why Watch and Wait?
The reason to wait is because almost always, any concerning symptoms or an abnormality on a scan go away. Why? Because they aren’t cancer. The fact is, rarely does a watch and wait situation result in a relapse. Watch and wait is a very accepted, normal practice in the treatment of lymphomas. This is another reason to have a good, experienced radiologist, so you'll know if there's a concern or not.

If you don’t trust your doctor when he/she says you should watch and wait, then this is someone you don’t trust and it’s time to get a second opinion.

If it does turn out to be a relapse, a few months of watching and waiting isn’t long enough for the Hodge to get out of control and it definitely won’t affect your prognosis or future treatment.

If you’re anxious about waiting, ask for another scan in two months rather than waiting three (if your insurance doesn’t give you a hard time).

Biopsy
If your doctor suspects a relapse, they'll order a biopsy immediately and won’t recommend a watch and wait. Keep in mind that a biopsy can still be a normal, reactive node. I've seen plenty of unnecessary biopsies prompted by a minor change on a scan noted by an inexperienced radiologist and/or an oncologist that isn't a lymphoma specialist and that doesn't recognize the clinical features of a relapse. (Do you see a trend here?)

Surgeons don’t want to go rooting around your body trying to find something to biopsy. It’s hard enough as it is to find something that’s 1-2 cm, even with a scan as guidance. No matter how close to the surface something is, it’s still surgery and has risks. If your doctor doesn’t want to do a biopsy, it’s because the invasiveness outweighs the benefit.

There are other ways to get reassurance besides a biopsy of something questionable, like getting a second opinion on your scan from another institution.

Final Thoughts
The purpose of this post is to to make you worry less, not more. You’ve been through enough. So enjoy being disease free!

Thanks alisonh!